Assuming

Some things about Autism/ASD forums. <><>>>>><><><><><><><><>
One of the things am hate about 'Autism'/'ASD' forums,is the assuming that all Autistic users are aspie or HFA.

And when people often write topics about Autism,they really mean hf aspergers,they write many topics on 'Autism is a difference,not a disability' -with something like 'Autistics shouldn't get disability benefits' attached,in the UK at least,a Autie or Aspie would not get DLA unless they had support needs,so it's not like they can get it just because of a label.

HFers do not speak for am,they do not speak for the whole spectrum,they cannot speak for the parents of Autistic children either,but the same for both ways also.
People on all ends of the spectrum have different experiences to the other,some things are shared,others seperate Autistics.
The cure issue is something am not against,as am would like a partial cure if one ever came along to remove what is keeping am in no quality of life,but leave the autistic core there.

Am not against idea of full cures,and think the choice should be there for those that want/need it,no one can tell another that they have to live with no quality of life and go through torture every waking day because some high functioners want it all to be seen as difference and not disability.

Am against the idea of assuming LFAers should be automatically cured,whilst aspies and HFAers should be given the choice [one common belief on WP that am have tried to speak against] ,as an LFAer,am believe am should have the choice just like any HFAer/Aspie and every other Autie who is able to communicate in some form should be able to choose [that is, if the time ever comes],people on the spectrum should be united against discrimination,not causing it at one another.

This comes back to the assuming that more obvious Autistics cannot possibly be using forums so do not exist on WP or anywhere else,so all are aspies,it doesn't help on WP either that the logo at the top says for aspergers syndrome,but the description at the index says for the whole spectrum and other things.

Am see Autism [meaning spectrum] as being both difference and disability,but further down it gets,the more disability and complex needs get added,why is it people have long campaigned for Autism to not be seen as the static classic autism only label,and be seen as a spectrum that differs greatly,and now it is being seen that way, some of them only want it to be seen as the static 'difference and not disability'?

People should not be offended at idea of cure [if it ever actually becomes possible] because the idea of the cure is meant for those who go through very tough challenges with their autism and have a poor quality of life as a result.
It would not be used on people with higher functioning forms,government think in funding [am have heard this often enough off council staff who work here] and would only pay for those most affected enough to make it worth it,it's about money and not humans to them.

Offence should be directed at the lack of support services for autie and aspie adults,the lack of understanding for autie and aspie adults,and the support acceptance of everyone on the spectrum,no matter whether they're LFA with profound MR,up to those who are on the spectrum but don't have enough traits to be diagnosed.


Another thing.......NTs.why so much hate to people with an NT brain?
Whether are NT or Autistic,it's flesh,bones,blood,and the squidgy bits inside that make NT and Autistic the same,they are not different in that way,so why let such a pointless difference change the way think about humans?
People who think the only cruel bastards out there are NTs clearly have not met enough Auties or Aspies yet,to end up meeting some of the Autistic edition.


Finishing,with a list of Autism facts/tips,whatever they would be called-where am use Autism,am also referring to Atypical Autism/PDDNOS.

• Not all Autistic users of forums are hf or aspie,remember the lf/mf Auties,PDDNOS Auties and those who are on the spectrum but so lightly affected they don't have a label for them.
• On forums,not everyone who doesn't hate the idea of a cure for Autism is a 'troll' or parent.
• Not all Autistics can use computers or even like them [including aspies].
• People with Autism or Aspergers can get benefits for support needs,if they are hfa/aspie it doesn't automatically mean they can work [there are lots of reasons why not,including complex needs] and they should not be abused for accepting SSD/SSI,DLA etc.
• Auties and aspies all have an individual experience of Autism/Aspergers and so should not be considered the same as the next Autie and Aspie-treat them as them with their own set of difficulties,challenges and differences,and not as the manual criteria for Autism or Aspergers.

Birthday

[Edited]
A non autism related post>>><<>><<><><><><

Have now got a xbox 360 [the limited edition halo 3 one,only because of the colour and not halo], Halo 3 and a great LCD HD TV to go with it-for birthday presents for self.
This would never have happened had the regular home manager [who hates am getting anything and has stopped am from getting an xbox since she became manager] not gone on holiday to America,as it's one of the others who has authorized it,thanks to her for going on holiday-could never have done this without her!

Halo 3 wouldn't work [and probably most 360 games] with other tv,because it's old,and wasn't NTSC speed? compatible,so they allowed am to get the TV today:

















Gaming in high definition is great!
Have mostly being been playing Turok [demo] which looks very great-despite using outdated graphics, and Halo 3 [looks even greater].

Anyway,games on the list to buy- Assassins Creed,Viva Pinata,the new GTA [in April] possibly Bully [already have it on ps2],Crackdown,Bioshock,Oblivion,Ninja Gaiden 2.......

Getting games for birthday off family,sister is taking am out and am going to get some original glazed donuts from the Krusty Krab [Krispy Kreme in Trafford Park,but am always get it mixed up with sponge bob as they sound the same might as well keep it that way]




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Overreacting?

Yesterday,they put agency staff on with am again [when they know this is a major cause of problems and pain],and am managed to make it through the first one by hiding in room [except am cannot lock them out because they broke the handle off ],and without a meltdown,but, unknown to am,they another agency lady came on shift after her and was sent to am [especially when they know what happens,and have been told not to by two autism specialists,a behavioral specialist,one of the managers,sister and dad]-that was when it set am off,am ran out the home and to usual spot in the alleyways,am sat down and rocked for a while with kooshball hoping was not going to meltdown,but one of the neighbours let his dog out and his constant barking triggered it.

Cannot remember much of it,apart from finding self not being able to move [had been restrained by the regular staff team who had come out looking for am]they asked the man [who they know] if he could move his dog away and bring him into his house,so am could recover,when am fully came out of it,they brought am back to home,and am refused to go in,and dropped to floor rocking,-they eventually worked out from all the attempted dragging that am did not want to go back in cause of the agency inside,but another staff came out and said she had spoke to one of the main managers,and they said "just get rid of her in an ambulance and away from there-let the paramedics deal with her".
The staff also said, "who's going to go with her",other one said "just send the agency staff with her" WTF........and they say am very slow at learning,they obviously hadn't took any notice of what just happened then.

Am tried signing [they haven't been taught it,no surprise there],and they said "look,shes trying to communicate" and asked if am wanted to go in,to speak via laptop,so they both restraint walked am in [one person on each side,which am find comforting when held tight] and got am up- told them [after this very slow laptop managed to load everything] what had heard,that no way am going to hospital,and what had caused am to go out.

They then got it sorted that am not having agency,for today [which havent had] and the manager is going to fight to get am the regular staff rather than agency-it's all because am get funding a bit different to everyone else in house,am get the most support,so they had to make some of it up with direct payments which is not allowed to pay for social services care,it goes through agency only,they are going to try and change that.

The manager who told the staff to phone the ambulance-have known for years,and even though he didn't work in this or the last home,he often came to see am,and also took am out for drives to stop am having meltdowns when that 'aspie bitch from hell' was doing her attention seeking screaming.

He knows am have an extreme hate/phobia? of hospitals and ambulances-due to sensory,unfamiliarity ,and close attention-again,all the specialists,family etc have told them of this and it's been written down for years,so they know as soon as they even try that,it's going to put am into attack mode,so they were risking paramedics and staff as well by wanting that to happen.

What am do not understand is why the same manager [and the rest of them],can say trying to kill herself and trying to make others attack her by torturing them [and a lot worse] is "part of her aspergers"[the aspie bitch from hell,from previous home],but they want am put in the pysch. ward for a meltdown which is not a pyschiatric problem-and are known to partly involve seizures,as well as being set off by autism and the enemies of autism -the setoffs such as routine changing.

Am do end up with a lot of damage from meltdowns,but this was a mild meltdown compared to usual,am had been self injuring,but recovered quicker than usual [definition of mild to am]-so they are going to have to get some other excuse of getting rid of am from here,they are looking for every excuse,but social worker is still trying to find somewhere more specialist in autism,the reason manager wanted am to be taken to hospital is because they can refuse to have am back home,so then am have to be found a place from there-it just shows how little understanding this particular manager has of autism doesn't it? that is the sort of torture that would end up with am being chemically restrained and strapped down so hard can hardly breathe.


Today,am met new CP nurse,she is going to see am every week to try and help with coping,and with all sorts of other things,she's also going to try and get am melatonin prescribed via the doctor.

Am going bird watching tomorrow [birds of prey] with the resident bird expert staff ,and am hoping no problems come up,just one day to go right,with no meltdowns,no overload,no bad?
There is a sparrow hawk [the bird expert said it was] who lives in the garden here,first time have ever seen a bird of prey,it's massive,one of the staff has seen it flying off with a sparrow in its claws.

No pain,no gain

Tuesday.......am was woken up to be told one of the other residents here is having a new door put on [drills,hammers etc],no warning,they know am need warning and have even been told this from parents,to the manager to autism specialists.
The men were already here,and am was in a state [not meltdown],ran straight out to usual 'sanctuary',a maze of back street alleys.

Two staff found am and said they would take am to Urmston to get some shopping,whilst the door was being put on.
So just as got across the road to the wall of the local junior school,a agonising screeching sound tore through head,it was a alarm,it set meltdown off immediately and am was KOd via what must have been head banging and/or punching,the staff restrained am on the floor whilst some community police officers who were passing by came over,and asked if they could help,they went and asked the person whos' alarm it was if they could turn it off,and went home to get cushions and pillows to put around am to stop any further damage.

When am came out of the meltdown,am overheard the staff saying how it is completely the wrong place for am,and need to be moved somewhere that can cope with am.
Hearing it from someone am really like has become typical,and used to it,have been called a burden to others since early childhood,then again,am sure sister would say the same thing about mum.

Am was brought back to home,but downstairs to recover in the lounge there,the manager came in and said she thinks am definitely having seizures during some meltdowns.
Am was left there for the rest of the day,until it started to get dark,the people who were fixing the other residents door hadnt even finished till then,unfortunately one of the residents downstairs came in the lounge,and kept banging and shouting,am couldn't run anywhere because the drill was going outside the main door.

Am ended up in another meltdown in the lounge and skull and brain got another smashing as it's badly bumped and bruised and am feel extremely sick and dizzy still,was restrained again,and finally got to go back upstairs after being like that all day.
Before am went up,am overheard staff downstairs say they can't do anything in the building when am about,it's not fair on anyone else-as if haven't overheard that for the past 23 years,yes,autism is the entire fault of the autistic and they exist only to cause other people problems-thats exactly what it always sounds like.



And wednesday........
they tried to put agency staff with am-who do not know,am need to have the same staff ,and have to be inducted with new staff on a 2-1 level,until get used to seeing them around,but the manager has not arranged this as she still thinks the previous agency lady am know for a long while is coming back.

Am locked self in room and tried to sleep until the regular staff came on for am,no chance of that,she started banging away at the door and shouting,am started cutting away at arm but the ring pull broke and then ended up in meltdown,the regular staff who had just come on kicked the door in and he,the staff team and the manager restrained am,they later said they had saved the laptop from a smashing and soaking[which had been on the bed at the time],am had just started drinking a can of redbull before meltdown,and when am came round from the MD,thought am had pissed in pants-quilt was soaking to,but no,just wasted a whole can of redbull [another one got wasted in one of yesterdays MDs to],there was redbull and water all over the floor [which is okay as it's the wooden stuff].

The manager has arranged for GP to come tomorrow to get all this stuff sorted out- the neurology visit,the ensure prescription [so no more complan],sleeping meds,and so on.
Think they want am to go on more meds for MDs,not sure what to think about that.



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