What do you know about autism?

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BlinkyBill
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It's World Autism Awareness Week this week (27th March - 2nd April)!

'Around 700,000 people in the UK are on the autism spectrum. Together with their families, this means autism is a part of daily life for 2.8 million people'.
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What do you know about autism?

Does it play a role in your life? Do you have experiences with it at home, at school, at uni or at work? Have you seen great or terrible examples of how people with autism are treated? If you have autism, can you share your experience?

What can we do as a society to support people with autism and their families?
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username2088165
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(Original post by BlinkyBill)
It's World Autism Awareness Week this week (27th March - 2nd April)!

'Around 700,000 people in the UK are on the autism spectrum. Together with their families, this means autism is a part of daily life for 2.8 million people'.
Spoiler:
Show


What do you know about autism?

Does it play a role in your life? Do you have experiences with it at home, at school, at uni or at work? Have you seen great or terrible examples of how people with autism are treated? If you have autism, can you share your experience?

What can we do as a society to support people with autism and their families?
I have Asperger's syndrome, so I'd like to think I know a bit about autism. My difficulties lie mainly with sensory things, such as loud noises and bright/flashing lights, and face to face communication - I'm much better at expressing myself through email or text for example, rather than through speech. I also have trouble with low mood and anxiety, whether they are related to my AS I'm not sure, but I would guess that they most likely are.

I struggled a lot in school (socially rather than academically), especially prior to my diagnosis (at age 12) when no one knew exactly why I was different. The thing I hated most was PE lessons. I hated all of the screaming and shouting that inevitably occurred in every lesson, never mind the sport itself. Having AS means that I'm not as good at things such as throwing and catching as other people, which meant that nobody wanted me on their team and I felt very isolated. I felt isolated anyway, not having any real friends, but I feel like that was particularly apparent during PE. Occasionally we'd do sports like tennis or badminton, and I enjoyed those. I wasn't very good at them, but at least I knew what was going on

When I got to college though, things seemed to get a lot better. I didn't make any new friends (I did try), and I still felt isolated, however I felt as though the tutors actually understood and acknowledged my needs. I was allowed to have extra time in exams, and I was also able to use word processing software and was given a separate room in which to take my exams (I still have these things at university, thankfully).

I could continue with my experiences, but I'll move on now as I would be here all day otherwise

In terms of what people can do to help people with autism and their families, the first thing I would say is to remember that all people with autism are individuals - it affects each of us differently, so what one person struggles with may not be so much of an issue for another.

Also, please be patient with us! There are many things that can cause problems for people with autism which a lot of people might not think about, especially when talking to someone. For example, misunderstanding jokes/sarcasm, struggling to hear due to background noise (I struggle a lot with this!), and making eye contact. While people who don't have autism may not have problems with these things, it's important to remember that people with autism often do, so try not to get annoyed if we aren't quite understanding what you're saying - it would be greatly appreciated!

That's all I will say for now, if anyone's interested then I've written a fair bit about what it's like having Asperger's on my TSR blog
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Tiger Rag
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I, like the person above me, have it. I also have a brother it. It also appears to run on both sides of the family; but I appear to be the only female with it...

Terrible examples of how people are treated:
- I've noticed with a lot of professionals, there's all this "I've met a person with Autism; you're nothing like him (bear in mind I'm female and we're different to males) therefore, you don't have it". Like a lot of people, I hide a lot of the issues I have. I used to attend a music group and had to apologise to someone for various reasons over a few issues. (I don't explain myself too well is the short version and I have issues with the way I understand language) Unfortunately, I could only hide it for so long. I do remember that rather awkward moment I overheard someone discussing with someone else whether I have Autism or not. Urgh. Both people know me well enough that they could have just asked... That would have been an equally strange conversation, but anyway...
- I was diagnosed as an adult and at the time, was on the work programme. (the job centre put you on this if you're unemployed for a certain amount of time) I explained that I have been diagnosed with Autism, plus something else which means I need extra support. To which the "adviser" responded with "well, it can't be that bad if you've just been diagnosed". That something else, you can actually go to bed and wake up with it, which actually happened to me.
- Social services won't have anything to do with me, because as well as believe my Autism is "just anxiety" (a condition I don't meet the criteria for and no-one has ever suggested I have) and believe it's ok to take me somewhere noisy. Noise can painful. And they think 30 minutes notice is ok. They claim I'm "awkward" for needing more notice and hating noise. I once got a right telling off for walking out of somewhere because it was too full of people - they know I don't like places full of people, because most of the time, it's noisy.

I have a friend (the one mentioned above who I had to apologise to) who is brilliant with me. Thankfully, he is patient with me and has had to learn (the hard way sometimes!) that a) he has to be careful how he words things and b) that he can't get away with saying certain things to me because I'll take it the wrong way (he once claimed I take everything literally) and think he's being rude.

Got a few serious issues atm - I can't read adult books because I find the language is oh so confusing. I can't always explain what I want either. In my head, I know what I do want; but ask me what I want (either via email, text or talking to me) and I can't put it into words.

I have a lot of sensory issues as well. Almost none of my senses are "normal".
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BlinkyBill
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(Original post by Leviathan1741)
I have Asperger's syndrome, so I'd like to think I know a bit about autism. My difficulties lie mainly with sensory things, such as loud noises and bright/flashing lights, and face to face communication - I'm much better at expressing myself through email or text for example, rather than through speech. I also have trouble with low mood and anxiety, whether they are related to my AS I'm not sure, but I would guess that they most likely are.

I struggled a lot in school (socially rather than academically), especially prior to my diagnosis (at age 12) when no one knew exactly why I was different. The thing I hated most was PE lessons. I hated all of the screaming and shouting that inevitably occurred in every lesson, never mind the sport itself. Having AS means that I'm not as good at things such as throwing and catching as other people, which meant that nobody wanted me on their team and I felt very isolated. I felt isolated anyway, not having any real friends, but I feel like that was particularly apparent during PE. Occasionally we'd do sports like tennis or badminton, and I enjoyed those. I wasn't very good at them, but at least I knew what was going on

When I got to college though, things seemed to get a lot better. I didn't make any new friends (I did try), and I still felt isolated, however I felt as though the tutors actually understood and acknowledged my needs. I was allowed to have extra time in exams, and I was also able to use word processing software and was given a separate room in which to take my exams (I still have these things at university, thankfully).

I could continue with my experiences, but I'll move on now as I would be here all day otherwise

In terms of what people can do to help people with autism and their families, the first thing I would say is to remember that all people with autism are individuals - it affects each of us differently, so what one person struggles with may not be so much of an issue for another.

Also, please be patient with us! There are many things that can cause problems for people with autism which a lot of people might not think about, especially when talking to someone. For example, misunderstanding jokes/sarcasm, struggling to hear due to background noise (I struggle a lot with this!), and making eye contact. While people who don't have autism may not have problems with these things, it's important to remember that people with autism often do, so try not to get annoyed if we aren't quite understanding what you're saying - it would be greatly appreciated!

That's all I will say for now, if anyone's interested then I've written a fair bit about what it's like having Asperger's on my TSR blog
(Original post by Tiger Rag)
I, like the person above me, have it. I also have a brother it. It also appears to run on both sides of the family; but I appear to be the only female with it...

Terrible examples of how people are treated:
- I've noticed with a lot of professionals, there's all this "I've met a person with Autism; you're nothing like him (bear in mind I'm female and we're different to males) therefore, you don't have it". Like a lot of people, I hide a lot of the issues I have. I used to attend a music group and had to apologise to someone for various reasons over a few issues. (I don't explain myself too well is the short version and I have issues with the way I understand language) Unfortunately, I could only hide it for so long. I do remember that rather awkward moment I overheard someone discussing with someone else whether I have Autism or not. Urgh. Both people know me well enough that they could have just asked... That would have been an equally strange conversation, but anyway...
- I was diagnosed as an adult and at the time, was on the work programme. (the job centre put you on this if you're unemployed for a certain amount of time) I explained that I have been diagnosed with Autism, plus something else which means I need extra support. To which the "adviser" responded with "well, it can't be that bad if you've just been diagnosed". That something else, you can actually go to bed and wake up with it, which actually happened to me.
- Social services won't have anything to do with me, because as well as believe my Autism is "just anxiety" (a condition I don't meet the criteria for and no-one has ever suggested I have) and believe it's ok to take me somewhere noisy. Noise can painful. And they think 30 minutes notice is ok. They claim I'm "awkward" for needing more notice and hating noise. I once got a right telling off for walking out of somewhere because it was too full of people - they know I don't like places full of people, because most of the time, it's noisy.

I have a friend (the one mentioned above who I had to apologise to) who is brilliant with me. Thankfully, he is patient with me and has had to learn (the hard way sometimes!) that a) he has to be careful how he words things and b) that he can't get away with saying certain things to me because I'll take it the wrong way (he once claimed I take everything literally) and think he's being rude.

Got a few serious issues atm - I can't read adult books because I find the language is oh so confusing. I can't always explain what I want either. In my head, I know what I do want; but ask me what I want (either via email, text or talking to me) and I can't put it into words.

I have a lot of sensory issues as well. Almost none of my senses are "normal".
Thank you so much for sharing this. It's amazing to hear how vastly different each individual's experience can be.

It also seems like you've both had experiences where the people who should be supporting you, just clearly don't seem to understand the condition at all. It must be incredibly frustrating for you. From my perspective, it seems like autism (including asperger's) in still not necessarily something that is discussed as openly as it should be.

Since your diagnoses, do you think much has changed in terms of identifying autism at an earlier age? Do you think it would have made a big difference had you received your diagnosis earlier?

What do you wish existed for people with autism, that currently doesn't?

Oh! And something I always wonder - do you care about the wording? Person with autism? Autistic person? Does it matter to you?
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Tiger Rag
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(Original post by BlinkyBill)
Thank you so much for sharing this. It's amazing to hear how vastly different each individual's experience can be.

It also seems like you've both had experiences where the people who should be supporting you, just clearly don't seem to understand the condition at all. It must be incredibly frustrating for you. From my perspective, it seems like autism (including asperger's) in still not necessarily something that is discussed as openly as it should be.

Since your diagnoses, do you think much has changed in terms of identifying autism at an earlier age? Do you think it would have made a big difference had you received your diagnosis earlier?

What do you wish existed for people with autism, that currently doesn't?

Oh! And something I always wonder - do you care about the wording? Person with autism? Autistic person? Does it matter to you?
I get the impression it's seen as a child's problem and that as an adult, you should have either grown out of it by now or learnt to adapt. I've got quite serious relationship issues which have meant that I keep get taking advantage of because I can't always understand people. It makes me extremely wary of new people.

I wish there was more help for adults. It seems there's help for children; but nothing at all for adults. I was just told to contact social services and a local support group. The local support group I couldn't cope with because of the lack of routine and too many people. It wasn't unusual to turn up and not have a clue what was going on.

The wording doesn't bother me.
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doodle_333
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what do I know about autism? a reasonable amount but I think it's probably impossible to truly understand how autism feels unless you are actually autistic and that's probably the most important thing. I know a reasonable amount of theory as I've worked with disabled people (from severely disabled to 'high functioning' for several years and have an autistic family member.

I think the worst thing I've seen is just how little people understand and stereotypes. People think that if you're 'high functioning' then you can't have too much of a problem because you're getting by OK when actually the autism is still causing huge amounts of distress. Or people think those with autism are incapable of social interaction or having friends. I think the most frustrating thing is people who think the autistic person just needs to adapt to the world - to an extent you have to learn to live in the world you have but there's no reason not to make small adjustments which make life so much easier to the autistic person just because 'they need to learn'.

I think what we can do is first and foremost increase understanding of autism. This will reduce the number of people diagnosed later in life which makes it much harder to learn to adjust and means their autism has a bigger impact on education etc. The next thing is to make small adjustments which make life easier for the people in our lives. Acceptance is key... people need to understand that they can communicate on the autistic person's level - i.e. clearly, straightforward and learn a little about their interests/obsessions, rather than always expecting the autistic person to adjust to their expectations.

Also more adult services would be great.
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BlinkyBill
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(Original post by Tiger Rag)
I get the impression it's seen as a child's problem and that as an adult, you should have either grown out of it by now or learnt to adapt. I've got quite serious relationship issues which have meant that I keep get taking advantage of because I can't always understand people. It makes me extremely wary of new people.

I wish there was more help for adults. It seems there's help for children; but nothing at all for adults. I was just told to contact social services and a local support group. The local support group I couldn't cope with because of the lack of routine and too many people. It wasn't unusual to turn up and not have a clue what was going on.

The wording doesn't bother me.
That's such a great point. I hadn't thought of how difficult it must be when school is over and your kind of left to sort things out yourself. It doesn't sound like there's much adequate support out there at all. It's bizarre to me that an autism support group doesn't really seem to cater to the needs of its members. Do you see a solution to this? Do you think there's a way to make the transition easier?
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BlinkyBill
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(Original post by doodle_333)
what do I know about autism? a reasonable amount but I think it's probably impossible to truly understand how autism feels unless you are actually autistic and that's probably the most important thing. I know a reasonable amount of theory as I've worked with disabled people (from severely disabled to 'high functioning' for several years and have an autistic family member.

I think the worst thing I've seen is just how little people understand and stereotypes. People think that if you're 'high functioning' then you can't have too much of a problem because you're getting by OK when actually the autism is still causing huge amounts of distress. Or people think those with autism are incapable of social interaction or having friends. I think the most frustrating thing is people who think the autistic person just needs to adapt to the world - to an extent you have to learn to live in the world you have but there's no reason not to make small adjustments which make life so much easier to the autistic person just because 'they need to learn'.

I think what we can do is first and foremost increase understanding of autism. This will reduce the number of people diagnosed later in life which makes it much harder to learn to adjust and means their autism has a bigger impact on education etc. The next thing is to make small adjustments which make life easier for the people in our lives. Acceptance is key... people need to understand that they can communicate on the autistic person's level - i.e. clearly, straightforward and learn a little about their interests/obsessions, rather than always expecting the autistic person to adjust to their expectations.

Also more adult services would be great.
You've raised some really good points. What do you think would be the best way to foster acceptance of people with autism?
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doodle_333
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(Original post by BlinkyBill)
You've raised some really good points. What do you think would be the best way to foster acceptance of people with autism?
I'm really not sure. I think with anything which is 'different' and uncommon it's hard to change people's mind. Perhaps better representation on TV would help - normal characters who just happen to be autistic rather than severely disabled people/jokes/savants which aren't representative of actual autistic people. Better integration - so helping people with autism to work and join clubs and so on so people just meet more autistic people and just hear more about autism so it sounds like diabetes or asthma or any other condition everyone just accepts. And probably also education plays a part - if kids understand autism they will grow up to be understanding adults.
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username2088165
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(Original post by BlinkyBill)
Thank you so much for sharing this. It's amazing to hear how vastly different each individual's experience can be.

It also seems like you've both had experiences where the people who should be supporting you, just clearly don't seem to understand the condition at all. It must be incredibly frustrating for you. From my perspective, it seems like autism (including asperger's) in still not necessarily something that is discussed as openly as it should be.

Since your diagnoses, do you think much has changed in terms of identifying autism at an earlier age? Do you think it would have made a big difference had you received your diagnosis earlier?

What do you wish existed for people with autism, that currently doesn't?

Oh! And something I always wonder - do you care about the wording? Person with autism? Autistic person? Does it matter to you?
You're welcome!

I definitely think things would've been better if I had been diagnosed earlier, not just for me but for the people around me - family, friends, teachers etc. Not knowing exactly why I was different meant that no one really knew how best to accommodate me, and my mum in particular used to get frustrated sometimes, because she couldn't understand why I liked routine so much and got anxious about certain things which generally wouldn't bother most people.

For me, these things included knowing where toilets were (if we went on a day out somewhere), or how long visitors to our house would stay, for example. She used to get mad at me for asking 'when is [name of visitor] leaving?', because she thought I was being rude, but I wasn't doing it intentionally - it was simply an interruption to my usual day and I wanted to know what was going to happen. Obviously I don't ask that any more, but being misinterpreted as being rude etc could've been avoided if I'd had my diagnosis earlier.

As others have mentioned, I also feel as though there is much more support available for young children with autism than older children/teenagers and adults. I have been lucky in that the university I go to is very 'in tune' with its autistic students (and students with other disabilities too), and the support they provide is excellent. However, obviously not every university, workplace etc is so understanding, and I think this really needs to change. It's so important to recognise the difficulties that people with autism face, and to remember that it's not easy for them to adjust to meet neurotypical expectations.

The wording doesn't really bother me, though I do particularly like the term 'Aspie' for a person with Asperger's, as it seems quite informal
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BlinkyBill
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(Original post by doodle_333)
I'm really not sure. I think with anything which is 'different' and uncommon it's hard to change people's mind. Perhaps better representation on TV would help - normal characters who just happen to be autistic rather than severely disabled people/jokes/savants which aren't representative of actual autistic people. Better integration - so helping people with autism to work and join clubs and so on so people just meet more autistic people and just hear more about autism so it sounds like diabetes or asthma or any other condition everyone just accepts. And probably also education plays a part - if kids understand autism they will grow up to be understanding adults.
Oh I think your idea about having more autistic people in things like film and television is a great one. The power when art adequately reflects society is incredible.
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BlinkyBill
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(Original post by Leviathan1741)
You're welcome!

I definitely think things would've been better if I had been diagnosed earlier, not just for me but for the people around me - family, friends, teachers etc. Not knowing exactly why I was different meant that no one really knew how best to accommodate me, and my mum in particular used to get frustrated sometimes, because she couldn't understand why I liked routine so much and got anxious about certain things which generally wouldn't bother most people.

For me, these things included knowing where toilets were (if we went on a day out somewhere), or how long visitors to our house would stay, for example. She used to get mad at me for asking 'when is [name of visitor] leaving?', because she thought I was being rude, but I wasn't doing it intentionally - it was simply an interruption to my usual day and I wanted to know what was going to happen. Obviously I don't ask that any more, but being misinterpreted as being rude etc could've been avoided if I'd had my diagnosis earlier.

As others have mentioned, I also feel as though there is much more support available for young children with autism than older children/teenagers and adults. I have been lucky in that the university I go to is very 'in tune' with its autistic students (and students with other disabilities too), and the support they provide is excellent. However, obviously not every university, workplace etc is so understanding, and I think this really needs to change. It's so important to recognise the difficulties that people with autism face, and to remember that it's not easy for them to adjust to meet neurotypical expectations.

The wording doesn't really bother me, though I do particularly like the term 'Aspie' for a person with Asperger's, as it seems quite informal
It's really interesting to have your insight into this. When I was teaching, I used to sometimes encounter parents who would not have their children diagnosed (although they were clearly struggling and would probably have benefited from the additional support they'd receive), for fear of 'labelling' their child. In your opinion, do you think there's merit to this at all?

How do you feel about the theory that everyone is on the autism spectrum somewhere?

I'm really surprised about the word 'aspie'! Do you know if this is a generally accepted term in autistic societies? Even now in Australia, 'aspie' is a BIG no-no. It's seen as very insulting. It's so interesting that two quite similar countries have such a difference around language.

Also:
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I've read a beautiful thread on TSR which I thought was something along the lines of 'Autism/Asperger's society' - do you happen to know where it is?

Also, I saw you mention your blog above. Would this be something you're comfortable sharing?
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MaxHeather
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My friend Matt has it
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ChaoticButterfly
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It played an important role in human evolution.

https://theconversation.com/how-our-...volution-73477
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username2088165
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(Original post by BlinkyBill)
It's really interesting to have your insight into this. When I was teaching, I used to sometimes encounter parents who would not have their children diagnosed (although they were clearly struggling and would probably have benefited from the additional support they'd receive), for fear of 'labelling' their child. In your opinion, do you think there's merit to this at all?

How do you feel about the theory that everyone is on the autism spectrum somewhere?

I'm really surprised about the word 'aspie'! Do you know if this is a generally accepted term in autistic societies? Even now in Australia, 'aspie' is a BIG no-no. It's seen as very insulting. It's so interesting that two quite similar countries have such a difference around language.

Also:
Spoiler:
Show



I've read a beautiful thread on TSR which I thought was something along the lines of 'Autism/Asperger's society' - do you happen to know where it is?

Also, I saw you mention your blog above. Would this be something you're comfortable sharing?


I can definitely understand why some parents would be reluctant to have their child diagnosed - peers won't always react positively to the news, due to ignorance or lack of understanding maybe, and it's possible that they may exclude or ridicule them for being different. Also, parents themselves may not entirely understand what autism is, and view it as a negative thing which they don't want themselves or their child to be labelled and burdened with. Whilst a diagnosis can be very helpful in terms of getting support, it can also be disabling in many ways - people may feel misunderstood, unwanted, depressed, isolated. I felt all of these things after I was diagnosed, it took several years before I finally started getting the support that I needed and accepting myself for who I was.

I've never really thought about that theory to be honest, I don't think that absolutely everyone is on the spectrum, but I have noticed that many people who I know not to be diagnosed do show some of the traits. I do think that a lot more people have it than we think.

Wow, I had no idea that the term Aspie wasn't accepted in Australia! I think it's fairly well accepted within the autistic community, in the UK at least. There is a website called wrongplanet.net, which is like an online forum specifically for people on the autistic spectrum from all around the world, and I see the term Aspie used on there quite frequently (though I am not a member myself).

Could this be the thread you're after?

Of course, this is my blog
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Tootles
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(Original post by BlinkyBill)
It's World Autism Awareness Week this week (27th March - 2nd April)!

'Around 700,000 people in the UK are on the autism spectrum. Together with their families, this means autism is a part of daily life for 2.8 million people'.
Spoiler:
Show


What do you know about autism?

Does it play a role in your life? Do you have experiences with it at home, at school, at uni or at work? Have you seen great or terrible examples of how people with autism are treated? If you have autism, can you share your experience?

What can we do as a society to support people with autism and their families?
I have Asperger Syndrome (formal diagnosis if autism level 1, which my doctor told me is simply the new formal name for AS). For me this mostly means I can't pretend to be interested in things or people I don't care about, and socializing is among those.

It also means I can't stand to be touched in certain ways, which has made physical relationships difficult at times - not that that makes much of a difference to my life anyway.

What do I know about autism? I know that most of us want to get on with our lives without people waffling on about it. And I know that all these "XYZ awareness" campains are ********, when is this condition's "awareness day" one day and then it's another's, and then it's such-and-such "awareness week/month." Gimme a ****en break.
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queen-bee
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I want to know more
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claireestelle
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My little sister was diagnosed with Aspergers last year, I don't think I can ever fully put myself in her shoes as I don't have it myself. Her school hasn't been great to say the least, it's unfortunate that she had barely any help until she was 7 and got diagnosed so her self esteem is already pretty bad.
I m hoping things get better for her now but being that I have a developmental condition myself I know she's got a lot of challenges ahead of her :/
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BlinkyBill
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(Original post by Leviathan1741)
I can definitely understand why some parents would be reluctant to have their child diagnosed - peers won't always react positively to the news, due to ignorance or lack of understanding maybe, and it's possible that they may exclude or ridicule them for being different. Also, parents themselves may not entirely understand what autism is, and view it as a negative thing which they don't want themselves or their child to be labelled and burdened with. Whilst a diagnosis can be very helpful in terms of getting support, it can also be disabling in many ways - people may feel misunderstood, unwanted, depressed, isolated. I felt all of these things after I was diagnosed, it took several years before I finally started getting the support that I needed and accepting myself for who I was.

I've never really thought about that theory to be honest, I don't think that absolutely everyone is on the spectrum, but I have noticed that many people who I know not to be diagnosed do show some of the traits. I do think that a lot more people have it than we think.

Wow, I had no idea that the term Aspie wasn't accepted in Australia! I think it's fairly well accepted within the autistic community, in the UK at least. There is a website called wrongplanet.net, which is like an online forum specifically for people on the autistic spectrum from all around the world, and I see the term Aspie used on there quite frequently (though I am not a member myself).

Could this be the thread you're after?

Of course, this is my blog
That's wonderful, thank you.
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EternalLight
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Is it a myth that those with Aspergers are generally of higher intelligence? If true I find it quite extraordinary that a mental disability can actually make you more intelligent, sure that's a gift!

Autism is like a spectrum right? With Aspergers being on the mild side?
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Do you think receiving Teacher Assessed Grades will impact your future?

I'm worried it will negatively impact me getting into university/college (171)
44.07%
I'm worried that I’m not academically prepared for the next stage in my educational journey (43)
11.08%
I'm worried it will impact my future career (32)
8.25%
I'm worried that my grades will be seen as ‘lesser’ because I didn’t take exams (83)
21.39%
I don’t think that receiving these grades will impact my future (37)
9.54%
I think that receiving these grades will affect me in another way (let us know in the discussion!) (22)
5.67%

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