Do you know any low functioning autistic people?

[Aidan49]

Are they able to live with any sort of independence at all?

How old are they and what is their gender?

Are they very much reliant on a routine?

How do they deal with changes in routine?

How much does their special interests rule their lives?

 

[Progster]

I only ever met one 'low functioning' autisitc person in my life, and that was a few years ago:

Are they able to live with any sort of independence at all?

No, she was reliant on her mum for pretty much everything - she could shower, brush teeth, go to the toilet herself, but not prepare food, shop, travel alone, etc.

How old are they and what is their gender?

A girl, now in early twenties.

Are they very much reliant on a routine?

Yes, I think so.

How do they deal with changes in routine?

I think that certain changes, or not being able to do with things, frustrated her a lot, but she seemed ok with things like having visitors come to the house.

How much does their special interests rule their lives?

I wasn't aware of her having any 'special interests', but I didn't know her very well - she wasn't often engaged with the world around her and stimmed a lot, playing with pieces of paper or other objects, and liked to listen to music. She went to a special school at the time, which didn't really help her because she was put in a class full of kids with varying disabilities and her mum felt that her specific needs weren't being addressed, so she wasn't reaching her full potential.

 

[Ezra]

Are they able to live with any sort of independence at all?

How old are they and what is their gender?

Are they very much reliant on a routine?

How do they deal with changes in routine?

How much does their special interests rule their lives?

I've always been in a school for autistics so I have been around several irl and have also been on an autism forum with a few. And my autism is moderate to severe. I was considered low functioning up until I was about 8 years old.

I myself have very little independence. I pretty much need to be looked after like a little kid. That's one of the primary definitions of low functioning or level 3 autism, is the need of significant support.

I've known LF people both irl and online ages 6 to 30's, both male and female.

There's a strong reliance on routine.

Getting upset to having a meltdown is the usual reaction to an unexpected or abrupt change in routine.

Special interest is pretty dominant.

 

[Aidan49]

I've always been in a school for autistics so I have been around several irl and have also been on an autism forum with a few. And my autism is moderate to severe. I was considered low functioning up until I was about 8 years old.

I myself have very little independence. I pretty much need to be looked after like a little kid. That's one of the primary definitions of low functioning or level 3 autism, is the need of significant support.

I've known LF people both irl and online ages 6 to 30's, both male and female.

There's a strong reliance on routine.

Getting upset to having a meltdown is the usual reaction to an unexpected or abrupt change in routine.

Special interest is pretty dominant.

Thank you for answering.

Is your routine set out so that you know what you are doing every minute? Or is it more flexible than that?

 

[Mr Allen]

I used to know several, but thankfully I got out of that scene about 11 years ago.

Call me a snob if you like, but I just don't mix well with people with whom you can't hold a coherent conversation.

 

[Astroganga]

Yes, one of my nephews. He is only five right now though so I don't know too much when it comes to long term outlook. He is almost completely non-verbal.

 

[Ezra]

Thank you for answering.

Is your routine set out so that you know what you are doing every minute? Or is it more flexible than that?

My routine is pretty much the same every day. But it's not rigid. Like I'm better off when left to my own devices. I post, I play my video game, I read etc. But not in the same order every day. I'm pretty open for being taken out for a walk and am willing to put things on hold for that because I like it so much. But if I have to be dragged off to someplace I need to be prepared for that. I have to be worked with on something like getting me to take a shower because that's outside of my routine.

 

[Ezra]

Yes, one of my nephews. He is only five right now though so I don't know too much when it comes to long term outlook. He is almost completely non-verbal.

I am glad I live in a time where texting exists.

 

[pjcnet]

Both my adult brothers are on the very low functioning end of the autistic spectrum and they at first thought I was same as a young child because my development and speech was extremely slow. In the 1970s however lower functioning autism was the only autism that was really recognised and if I hadn't had been extremely slow developing it's unlikely I would have been diagnosed back then at all. Because experts believed that autism wasn't an inherited condition in the 1970s and all 3 of us were thought to be autistic, some of the highest experts in the UK took a close interest in us including the highest expert of all, Professor Michael Rutter (now Sir Professor Michael Rutter for his work with autistic children) who officially diagnosed all 3 of us as having autism at the Maudsley Hospital in London. Unlike my brothers however as I got older I started making big improvements, although I was left with numerous autistic traits which have affected me all my life.

Are they able to live with any sort of independence at all?

No they are capable of absolutely no independence what-so-ever and to be honest anyone who is truly on the low functioning end of the autistic spectrum cannot be independent, there are people who claim to be low functioning who can read/write and are able to look after themselves, these are in my opinion at the very least medium functioning despite claims to the contrary. I also met a few other people on the lower functioning end of the autistic spectrum when I've visited their day centres, I wouldn't consider any of them capable of independence.

My brothers are currently still being cared for by my now elderly parents, it is very worrying because they're now in their late 70s. My brothers have impaired speech, they can't count to 5, they can't read or write, they can just about write their name very slowly, but it's barely readable, they have no concept of value or money and can't do most things a "normal" person can. They can now just about dress themselves, but even then they could get things wrong, even washing they need help and supervision as they would for instance not be-able to mix the water to a safe temperature, plus they have no concept of tidying anything up. They can't prepare food or even drink, in fact they wouldn't even be-able to prepare bread and butter. Expecting them to be independent would be in some ways similar to expecting a 2 year old child to do exactly the same, without help they would literally die and they need 24/7 care, in fact in some ways it would be even worse because their behaviour is also very difficult to handle, if David meltdowns he for instance growls and bites his finger while screaming and he can hit his head on the worst occasions, while Daniel will scream and throw himself on the floor, it's a constant struggle for my parents to avoid this from happening as it doesn't take much. Another issue is both of them will go into almost a trance in their own world if someone they don't know tries to speak to them, they're also both extremely vulnerable and would take no action if someone for instance took something off them, except go into meltdown on the spot and they wouldn't for instance go and get help, this has happened in the past including when they used to attend special school so they need to be watched at all times.

I am very worried because when my parents are gone they'll be at the mercy of the state for their care, especially with recent reports of shocking abuse in adult care homes and no-one else has ever been able to handle or control their meltdowns. I don't want the state drugging them into zombies as they've tried to do on a number of occasions (my parents stopped it) and I know I will have to fight for them in my limited capacity if I'm still able (I'm now 48, I'm not in good health and I'm struggling with barely any support in a flat on my own). I also suspect the level of care in most care homes doesn't come up to the standard you would expect and this is made even worse in the UK at least with budget cuts, even my brother's adult day centre is under threat of closure which it vital to both get them out doing things as part of their routine, and also to give my parents a much needed break. What the state don't seem to understand is if my parents were unable to care for them, it would cost them MUCH more to look after them in a care home and closing much needed support like day care centres is only likely to cause this to happen sooner for some carers, so it will actually cost them more money by closing it in the long run while making it much harder for everyone including the autistic people themselves.

How old are they and what is their gender?

Both my brothers are slightly younger than myself in their 40s, Daniel is 46 and David is 44.

Are they very much reliant on a routine?

Both need to keep a strict routine which is currently kept in place by my parents, they can surprisingly cope with certain big things like going away on holiday for instance, although this is kind of a routine in itself and they tend to go to the same place, but some little changes could upset them greatly, especially for David who has more understanding of what goes on around him than Daniel. If I visited them at a different time for instance, David would go on and on about it repeatedly, sometimes for days, he would constantly drive my parents up the wall and he'd most probably go into a meltdown about it on more than one occasion too. I have to be really careful when I visit and sadly it's safer to visit when they're at the day centre meaning that I don't see my brothers as often as I'd like. Daniel is even less able and my parents also suspect he's brain damaged, he wouldn't be upset by myself visiting at a different time and he'd be very quiet about it, but if a certain change upsets him he would suddenly go into a huge meltdown without any warning, throwing himself on the floor, this could be caused by something we'd think is very small like moving an object that he is attached to and then can't find, or perhaps even taking him somewhere he doesn't like that he's not used to.

How do they deal with changes in routine?

If it's a change of routine they are unable to handle it can cause severe stress, meltdown and a lot of problems for my parents, also please see the answer above for more details.

How much does their special interests rule their lives?

Daniel who is less able doesn't really have a special interest, except he makes motor noises in complex sequences and holds objects close to him like a straw for instance. If his motor sequences are interupted he will get upset and restart the sequence, if it happens too many times he will go into full meltdown as he would if he lost one of his special objects. He also likes watching action programmes on TV, he doesn't understand the plot, but he gets excited by the action and enjoys it that way. That's the closest he gets to a special interest.

David who is a little more able, but in some ways harder to look after has got special interests, he is very good at drawing and surprisingly also good at controlling a football because autism often impairs co-ordination, although sadly he isn't able to comprehend the rules of playing football and wouldn't be-able to cope playing with other people. His special interests don't exactly rule his life, although that is mainly all he does when he's at home, it is different for myself however with higher functioning autism and computers.


PS: Even though I'm now on the higher functioning part of the spectrum, I still see much of myself in my brothers to a lesser extent. My parents say that in some ways I've actually had it harder than my brothers because I'm left to fail with barely any support, I've most certainly had a difficult life, especially since I moved out and fell flat on my face. I've been left to learn the hard way in numerous ways and I've found that most people have very little understanding, in fact I often feel persecuted for being autistic and I've also been left to be taken advantage of where no-one ever helps, in fact there's times I've been punished for it. I had a more recent diagnosis a couple of years ago of ASD and OCD.

 

[Aidan49]

Both my adult brothers are on the very low functioning end of the autistic spectrum and they at first thought I was same as a young child because my development and speech was extremely slow. In the 1970s however lower functioning autism was the only autism that was really recognised and if I hadn't had been extremely slow developing it's unlikely I would have been diagnosed back then at all. Because experts believed that autism wasn't an inherited condition in the 1970s and all 3 of us were thought to be autistic, some of the highest experts in the UK took a close interest in us including the highest expert of all, Professor Michael Rutter (now Sir Professor Michael Rutter for his work with autistic children) who officially diagnosed all 3 of us as having autism at the Maudsley Hospital in London. Unlike my brothers however as I got older I started making big improvements, although I was left with numerous autistic traits which have affected me all my life.

Are they able to live with any sort of independence at all?

No they are capable of absolutely no independence what-so-ever and to be honest anyone who is truly on the low functioning end of the autistic spectrum cannot be independent, there are people who claim to be low functioning who can read/write and are able to look after themselves, these are in my opinion at the very least medium functioning despite claims to the contrary. I also met a few other people on the lower functioning end of the autistic spectrum when I've visited their day centres, I wouldn't consider any of them capable of independence.

My brothers are currently still being cared for by my now elderly parents, it is very worrying because they're now in their late 70s. My brothers have impaired speech, they can't count to 5, they can't read or write, they can just about write their name very slowly, but it's barely readable, they have no concept of value or money and can't do most things a "normal" person can. They can now just about dress themselves, but even then they could get things wrong, even washing they need help and supervision as they would for instance not be-able to mix the water to a safe temperature, plus they have no concept of tidying anything up. They can't prepare food or even drink, in fact they wouldn't even be-able to prepare bread and butter. Expecting them to be independent would be in some ways similar to expecting a 2 year old child to do exactly the same, without help they would literally die and they need 24/7 care, in fact in some ways it would be even worse because their behaviour is also very difficult to handle, if David meltdowns he for instance growls and bites his finger while screaming and he can hit his head on the worst occasions, while Daniel will scream and throw himself on the floor, it's a constant struggle for my parents to avoid this from happening as it doesn't take much. Another issue is both of them will go into almost a trance in their own world if someone they don't know tries to speak to them, they're also both extremely vulnerable and would take no action if someone for instance took something off them, except go into meltdown on the spot and they wouldn't for instance go and get help, this has happened in the past including when they used to attend special school so they need to be watched at all times.

I am very worried because when my parents are gone they'll be at the mercy of the state for their care, especially with recent reports of shocking abuse in adult care homes and no-one else has ever been able to handle or control their meltdowns. I don't want the state drugging them into zombies as they've tried to do on a number of occasions (my parents stopped it) and I know I will have to fight for them in my limited capacity if I'm still able (I'm now 48, I'm not in good health and I'm struggling with barely any support in a flat on my own). I also suspect the level of care in most care homes doesn't come up to the standard you would expect and this is made even worse in the UK at least with budget cuts, even my brother's adult day centre is under threat of closure which it vital to both get them out doing things as part of their routine, and also to give my parents a much needed break. What the state don't seem to understand is if my parents were unable to care for them, it would cost them MUCH more to look after them in a care home and closing much needed support like day care centres is only likely to cause this to happen sooner for some carers, so it will actually cost them more money by closing it in the long run while making it much harder for everyone including the autistic people themselves.

How old are they and what is their gender?

Both my brothers are slightly younger than myself in their 40s, Daniel is 46 and David is 44.

Are they very much reliant on a routine?

Both need to keep a strict routine which is currently kept in place by my parents, they can surprisingly cope with certain big things like going away on holiday for instance, although this is kind of a routine in itself and they tend to go to the same place, but some little changes could upset them greatly, especially for David who has more understanding of what goes on around him than Daniel. If I visited them at a different time for instance, David would go on and on about it repeatedly, sometimes for days, he would constantly drive my parents up the wall and he'd most probably go into a meltdown about it on more than one occasion too. I have to be really careful when I visit and sadly it's safer to visit when they're at the day centre meaning that I don't see my brothers as often as I'd like. Daniel is even less able and my parents also suspect he's brain damaged, he wouldn't be upset by myself visiting at a different time and he'd be very quiet about it, but if a certain change upsets him he would suddenly go into a huge meltdown without any warning, throwing himself on the floor, this could be caused by something we'd think is very small like moving an object that he is attached to and then can't find, or perhaps even taking him somewhere he doesn't like that he's not used to.

How do they deal with changes in routine?

If it's a change of routine they are unable to handle it can cause severe stress, meltdown and a lot of problems for my parents, also please see the answer above for more details.

How much does their special interests rule their lives?

Daniel who is less able doesn't really have a special interest, except he makes motor noises in complex sequences and holds objects close to him like a straw for instance. If his motor sequences are interupted he will get upset and restart the sequence, if it happens too many times he will go into full meltdown as he would if he lost one of his special objects. He also likes watching action programmes on TV, he doesn't understand the plot, but he gets excited by the action and enjoys it that way. That's the closest he gets to a special interest.

David who is a little more able, but in some ways harder to look after has got special interests, he is very good at drawing and surprisingly also good at controlling a football because autism often impairs co-ordination, although sadly he isn't able to comprehend the rules of playing football and wouldn't be-able to cope playing with other people. His special interests don't exactly rule his life, although that is mainly all he does when he's at home, it is different for myself however with higher functioning autism and computers.


PS: Even though I'm now on the higher functioning part of the spectrum, I still see much of myself in my brothers to a lesser extent. My parents say that in some ways I've actually had it harder than my brothers because I'm left to fail with barely any support, I've most certainly had a difficult life, especially since I moved out and fell flat on my face. I've been left to learn the hard way in numerous ways and I've found that most people have very little understanding, in fact I often feel persecuted for being autistic and I've also been left to be taken advantage of where no-one ever helps, in fact there's times I've been punished for it. I had a more recent diagnosis a couple of years ago of ASD and OCD.

Thank you for your response.

 

[Aidan49]

My routine is pretty much the same every day. But it's not ridgid. Like I'm better off when left to my own devices. I post, I play my video game, I read etc. But not in the same order every day. I'm pretty open for being taken out for a walk and am willing to put things on hold for that because I like it so much. But if I have to be dragged off to someplace I need to be prepared for that. I have to be worked with on something like getting me to take a shower because that's outside of my routine.

I'm kind of like that too in that I have a routine but i can be flexible around it.

 

[WildCat]

I've only witnessed one person with it, an attendee at a church I used to go to years back. I didn't realize that there was a name for this at the time and that I would be re-diagnosed not long after.

He would get out of his seat during service, stare down at the floor and pace up and down the main lobby with his hands in front (stimming?). That kind of behavior stands out from the crowd, so obviously there was something unique about it. Only looking back on it now do I realize he very likely had a form of ASD.

 

[Ezra]

I'm kind of like that too in that I have a routine but i can be flexible around it.

My personal routine is sitting at my desk on the internet. So in that way it is not flexible. And there's only a handful of sites I go to. The only thing that's flexible is in what order I go to them and how long I spend on each. And the funny thing is that I want to be left alone, but family members getting me to change my clothes, provide meals, get me to shower, lights out and in bed, take me outside for a walk etc is also part of my routine I realize now. And that part needs to be rigid.

 

[Sozdatelniza]

I used to know a boy with low functioning autism.
He's 10 years old now and he can't speak a word. He doesn't care much about routine. But he constantly gets meltdowns.

Once he spontanly went away to the park. His parents were pretty shocked and I was helping them to find him. Eventually, police has found him.

When I think back about my childhood he reminds me of myself. Because I used to be almost like him.
It sounds a little strange because I have high functioning autism.

 

[Full Steam]

I've always been in a school for autistics so I have been around several irl and have also been on an autism forum with a few. And my autism is moderate to severe. I was considered low functioning up until I was about 8 years old.

I myself have very little independence. I pretty much need to be looked after like a little kid. That's one of the primary definitions of low functioning or level 3 autism, is the need of significant support.

I've known LF people both irl and online ages 6 to 30's, both male and female.

There's a strong reliance on routine.

Getting upset to having a meltdown is the usual reaction to an unexpected or abrupt change in routine.

Special interest is pretty dominant.

Whats your feelings about functional labels?

I know a lot of people dislike them, but I also suspect most of those getting annoyed are would be considered HFA.

Not sure how much is people being overly touchy.

I've never encountered problems and only got dx last year.

 

[Mary Anne]

I've always been in a school for autistics so I have been around several irl and have also been on an autism forum with a few. And my autism is moderate to severe. I was considered low functioning up until I was about 8 years old.

I myself have very little independence. I pretty much need to be looked after like a little kid. That's one of the primary definitions of low functioning or level 3 autism, is the need of significant support.

I've known LF people both irl and online ages 6 to 30's, both male and female.

There's a strong reliance on routine.

Getting upset to having a meltdown is the usual reaction to an unexpected or abrupt change in routine.

Special interest is pretty dominant.

How have you learned to cope day to day so locked inside? I find this sort of challenge such a mystery and my heart goes out to you.

 

[Mary Anne]

I used to know a boy with low functioning autism.
He's 10 years old now and he can't speak a word. He doesn't care much about routine. But he constantly gets meltdowns.

Once he spontanly went away to the park. His parents were pretty shocked and I was helping them to find him. Eventually, police has found him.

When I think back about my childhood he reminds me of myself. Because I used to be almost like him.
It sounds a little strange because I have high functioning autism.

Can I ask how usual is it for someone who was “low functioning” in childhood to transcend into “high functioning” as they grow up? I do not know about this at all.

 

[pjcnet]

Can I ask how usual is it for someone who was “low functioning” in childhood to transcend into “high functioning” as they grow up? I do not know about this at all.

When I was very young in the 1970s there was no such thing as high functioning autistic people or Asperger Syndrome, there was just autistic people and usually only people who would today be considered as on the lower functioning part of the spectrum were diagnosed at all. I was diagnosed because I was extremely slow with speech development and most other things. Also because both my brothers are on lower functioning part of the spectrum we took the interest of the highest experts in the UK because back then it was believed that autism wasn't inherited. My point is people believed I was the same as my brothers in the 1970s, but unlike them I started improving as I got older and other people apart from just my parents started to understand my speech by the time I was about 7, but I was still left with numerous autistic traits which I've kept into adulthood and even then I've fell flat on my face because I haven't been able to do what's expected of me in certain situations where people for some reason don't understand why. How common it is, well as far as I know it's not that common, most people who are considered on the higher functioning part of the autistic spectrum wouldn't had been noticed back in the 1970s before it was better understood and most never appeared to be on the lower functioning part of the spectrum like myself even when they were very young.

 

[Mary Anne]

My personal routine is sitting at my desk on the internet. So in that way it is not flexible. And there's only a handful of sites I go to. The only thing that's flexible is in what order I go to them and how long I spend on each. And the funny thing is that I want to be left alone, but family members getting me to change my clothes, provide meals, get me to shower, lights out and in bed, take me outside for a walk etc is also part of my routine I realize now. And that part needs to be rigid.

When I was very young in the 1970s there was no such thing as high functioning autistic people or Asperger Syndrome, there was just autistic people and usually only people who would today be considered as on the lower functioning part of the spectrum were diagnosed at all. I was diagnosed because I was extremely slow with speech development and most other things. Also because both my brothers are on lower functioning part of the spectrum we took the interest of the highest experts in the UK because back then it was believed that autism wasn't inherited. My point is people believed I was the same as my brothers in the 1970s, but unlike them I started improving as I got older and other people apart from just my parents started to understand my speech by the time I was about 7, but I was still left with numerous autistic traits which I've kept into adulthood and even then I've fell flat on my face because I haven't been able to do what's expected of me in certain situations where people for some reason don't understand why. How common it is, well as far as I know it's not that common, most people who are considered on the higher functioning part of the autistic spectrum wouldn't had been noticed back in the 1970s before it was better understood and most never appeared to be on the lower functioning part of the spectrum like myself even when they were very young.

Thank you for sharing. Interesting how you were able to develope further but your brothers stayed the same. This autism is such a mystery.

 

[Sozdatelniza]

Can I ask how usual is it for someone who was “low functioning” in childhood to transcend into “high functioning” as they grow up? I do not know about this at all.

I can't tell how usual it is. I think I was never low functioning at all.

I was conscious enough about everything what happened around me. But according how my parents described me in my childhood I could speak but badly. I learned to phrase sentences correctly when I was about 5 years old.

Then I started to show that I'm not low or middle functional autistic at all.