Friday, 16 April 2010

Online autistic community

One of the problems that affects the online autistic community is the lack of a spectrum,mostly concentrating on issues,beliefs and experiences more common to the high functioning unsupported end of Aspergers.

There are a few reasons why this is,not least because of the difficulties with interaction,language,learning and communication,but a wider problem have experienced is the lack of welcoming and understanding to moderate and severe autists who have ability to use the internet.

Have also seen a lot of nastiness and lack of [trying to] understand towards those of us who are pro choice or pro cure when it comes to mod/sev/prof. autism with a low quality of life,parents of autistic children especially seem to get a hard time when it comes to this,because they get highly functioning adults-who are not/have not had the same living experience and quality of life as the parents child has/will have, being told how to look after their children,from a HF view, which doesnt work.

Another problem have experienced,is users using their own rules to what each level of autism,and label is about as they have so little experience of ASD apart from their own/family/whoever.
In classic autism,many do not understand that mild,moderate,severe and profound autism can not be put into one description for each,because they are all spectrums-even people who specialise in us often judge like this.

we are all very different in how autism is experienced,and will even find some profoundly autistic people can do some things that someone lower down on the severity level cant do.
A common belief is that anyone who claims to have severe autism online is automatically a fraud because we woudnt be able to use computers, use the internet,communicate in they also think severe intelectual disability is always attached so that woud count us out-it isnt! severity is not the same thing as functioning either.

Am limited a lot online,due to interaction and communication- can be sat here all day trying to put sentances together,and find it extremely difficult to get into interactive mode online as well to do back-forth messages,often not realising the amount of messages that go unswered,but no matter the difficulty,being online had opened up a world of freedom.

Besides being completely useless at everything including computers/ internet,staring at the walls all day in a corner,and having a severe intelectual disability,we are supposed to have no humour at all [aspies at least are starting to be understood a bit better with humour now-as it is being changed to 'different',from none at all],just as well those who think these things arent our specialists and understanding support staff,though they sound like they woud be perfect as ATOS doctors [thats those untrained doctors that use books to tell them to chuck everyone off long term sickness/disability benefits unless they are in a coma]!
What happened to judging autism as well as the person,instead of comparing against whatever autism manual they are using like a bible?

Am always being reminded about being funny [child/toilet humour],but dont try to be or notice,and cant remember having known another Autie without their own humour [though there maybe,just as with aspies].

ASD forums are not well set up for us,on the other half of the spectrum,eg-those CAPTCHA things to stop spam bots registering will often require another person to do all the registering if the autie
has limited maths or question understanding,and it takes away the freedom that we have from being online.
There are often users that are called 'grammar nazis' [think thats the word?],these are users who attack,or at the least point out all the language or spelling mistakes of another user,for those of us who have different communication styles or,a limited understanding of language,or word difficulties,dyslexia etc,this is one of the most off putting things on a forum,and is in a way,a form of bullying.
Some spectrumers have a innocent habit of doing this as part of their
ASD,but people dont come to forums to be given language tests either.

-Many users have very little experience of spectrumers beyond themselves or family,so do not know how to react to us,and the different experiences that we write.
Some have even reacted with hate or have taken advantage and bullied,because we might be easier to get information from,they have a bias,prejudice and no understanding of us and project their own faults onto us.

They may react with jealousy and hate-they think we get instant understanding and care,because their own condition,illness or ASD is less visible and they have a harder time of getting any help,we are always assumed to be understood easily,get help easily and have [unwanted] 'sympathy' piled ontop,but it isnt further from the truth most of the time.

The other side always looks nicer.
We often have to cope with being seen as heavy burdens on everyone and everything,many do not realise we may be following what they are saying,if we are trying to communicate with an alt. form,they think its attention seeking or challenging behavior.
Though this can affect everyone,we may have to see comparisons against our sisters/brothers constantly by family,on how we will never be like them,how great they are [listing all the good things they have done,and none of the goals we have done-only bad]-yes,what a bloody great disapointment we are.
It is a lot harder for us to get things out,so have to relie on those around us to know whats wrong,unless are able to translate it from head-to some sort of communication.

If are going to [example] -PC world to buy a new laptop with support staff-and are fully non verbal at the time,but do have a typer to communicate with, who do think the usual predator shop staff are going to speak to? the one showing all the computer understanding via text, or the support staff who are rubbish with computers?
That is exactly what happens as normal-a ghost to people-even to some regulars that self know well,and they turn the sympathy on overkill [for whoever are with].

People shoud never judge an Autie on their severity label,it stops those of us who are severely autistic but not the outdated meaning of low functioning from being understood and believed,and it stops severely and profoundly autistic people who are low functioning by the outdated meaning,from been given hope for improvement.

The amount of us on ASD communities is not going to improve any time soon,but when there are-please do not treat us as any less a user or worth.

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