Well, this certainly defies belief. I was invited to the local launch of the "I Exist" campaign run by the National Autistic Society. I had emailed to say "Will it be autism-friendly?". No response. I turned up anyway, found there was no agenda or any information about what would happen in the meeting. At the end of it, they suddenly invited everyone to go to the next room (very echoey room, too) to take part in a face to face social event so that the 50-or-so people from health, councils and education could meet with each other and with those on the autistic spectrum. (!)
How stressful is that for aspies? I'd give it 10 out of 10 on my Stress Scale.
An aspie guy and I were comparing notes at the end, and he agreed that they had seemingly given no thought whatsoever to the needs of the aspies in the audience. He left very early, and so did I. I tried to email them to ask if they can give some thought to it at the next events, but their email doesn't work - they've put down the wrong email address on the correspondence.
So much for the campaign to provide better services and understanding for adults. If our own charity has apparently no clue, what chance has anyone else got? (sigh)
I'll be posting them a letter.
Yeah. I'm over here in Michigan, USA and all I have to go on is a google search for "i exist" and somewhat basic knowledge of how humans operate in general (sorta)... but that's not going to stop me from generalizing
the place is *probably* run by some people that want to make a difference, want to help, but are almost completely clueless. I mean, really, they don't feel any stress in that situation; and they probably can't understand how anybody could.
Like my mom said to me, back in middle school (like grade 7 or so). She was trying to understand ... something, don't know what really, and asked me what was wrong, I said there was a lot of stress. She said, "Stress? What stress? You got it made! No bills to pay, just go to school!" crap now I gotta work on those marching ANTs again.
People are generally clueless and simply cannot understand.
Ok. Enough generalizations, now.
Hi featherways,
I'm familiar with the NAS and the fact that they don't always 'get it'. I think that part of the problem is that they see themselves as an information giving service (and I belive historically that it was possibly set up by, but at least had a lot of involvement from, NT parents) rather than anything else.
Obviously this needs to change, (especially in light of the 'I Exist' campaign - you can't campaign effectively about something you don't understand!) and some of the more enlightened people there realise this - so I think it is great that you are writing a letter as I do know that they are fairly receptive to feedback.
I too have had mixed experiences with the NAS - some very good, some inexplicably unhelpful - but I do think that it is worth persevering and taking the time to educate them.
The local organisation here was set up by parents to help parents. Recently they advertised a job as a support worker where 'Autism Spectrum Disorder' only appears once, and the individual/client only rates a mention four times in 2 1/2 pages. There was no requirement for knowledge of ASD. Just about everything was about supporting the organisation and working within a team approach. For all of that, the pay is lousy.
I offered to redevelop their website as a volunteer, but when I strangely insisted that I work in an area that did not have fluoroscent lights, or where people would be walking behind me, their reaction was infuriating. Although they do have other adult volunteers, obviously they aren't quite so 'difficult'. It almost was as if they had patted me on the head and treated me like a two year old.
I am now considering establishing an organisation that excludes them on the basis of their obsession with swarming (meetings), light worship (every light in the #* building), and their maladpative behaviours reflected in their overwhelming fear of being in contact with anyone who challenges them on their personal attitudes and behaviours towards ASD.
***Rant warning***
What still surprises me is that some of these organisations have some famous mature age members as spokespersons, some of us are older than them and yet they still think of us and treat us as tantruming children. Or, they say that we can't express our views, because we obviously aren't as disabled as their children, and therefore by association haven't gone through what the parents have.
Since I do not believe that 75% of people with Autism are actually 'mentally retarded', I must be either a bit simple myself, or do not know what I am taking about. I occasionally tell them that the language that they use and the behaviours they present show them as being patronising, sometimes deceitful, and definitely out to prove ... themselves right.
When I reword some of their tests, or change them to include tests of perception rather than knowledge of math or analogies, they dismiss my concerns as irrelevant. When I offer alternative explanations of some of their theories, they look to each other and change the subject. When I tell them that there are other explanations of our behaviour, they assume that I am being difficult or that I do not understand. When I tell them that I am not anxious about whatever has just happened, but that it was the last straw after assaults by lights and noise and smell and attitudes and lack of sleep and not having any money and, and, and ... they tell me to take my meds and it will all be better in the morning. When I am outraged to meltdown by their latest words or actions, they keep their distance and tell each other that my behaviour justifies them in their attitudes.
When I tell parents that their child is not violent, but that he or she has to process everything intellectually and that they are expecting instant and spontaneous enthusiam (and obedience) for pointless activities.
When I tell them that stopping their child from calming themselves via their stim or perseveration will likely lead to the violence that frightens them, they say I do not know their child.
When I tell them that their child understands a lot more than they can communicate, they say I do not know their child.
When I suggest that they teach their child to use a computer, they react with fear and trepidation and say it is a waste of time or money or that wasn't what was recommended by the 'experts'.
***End rant***
Yes, I do think it is amazing.
It may be simpler to give up on them than to educate them.
Sometimes, I wonder about this myself. I was involved for a time in a local autism group that met in a room that could be crowded if there was a good attendance and where just about all the adults constantly interjected each other's conversations.
Even when I said something about the noise levels, nothing was really done. I get the same where I work. It's as if we are not seen as needing any understanding and assistance in even little things such as reducing noise and overbright lighting.
These parents just want their children replaced by the irrational, delusional fantasy children they think they were "supposed" to have. That is what it boils down to. They do NOT want to understand. They do NOT want to communicate. They want to dominate and control. They want to destroy diversity and kill off anything that does not fit their delusional fantasies.
Anything and anyone that forces them to deal with us as if we were actual human beings and not objects to be manipulated and controlled is rejected by these vile creatures.
I have found that very few organizations treat their volunteers well.
Or they are intelligent but cannot tell us what they know
***Rant warning***
Since I do not believe that 75% of people with Autism are actually 'mentally retarded',
Then they go off to Burger King after the parent meeting to Have It Their Way, Right Away
These parents just want their children replaced by the irrational, delusional fantasy children they think they were "supposed" to have. That is what it boils down to. They do NOT want to understand. They do NOT want to communicate. They want to dominate and control. They want to destroy diversity and kill off anything that does not fit their delusional fantasies.
Anything and anyone that forces them to deal with us as if we were actual human beings and not objects to be manipulated and controlled is rejected by these vile creatures.
Well, this certainly defies belief. I was invited to the local launch of the "I Exist" campaign run by the National Autistic Society. I had emailed to say "Will it be autism-friendly?". No response. I turned up anyway, found there was no agenda or any information about what would happen in the meeting. At the end of it, they suddenly invited everyone to go to the next room (very echoey room, too) to take part in a face to face social event so that the 50-or-so people from health, councils and education could meet with each other and with those on the autistic spectrum. (!)
How stressful is that for aspies? I'd give it 10 out of 10 on my Stress Scale.
An aspie guy and I were comparing notes at the end, and he agreed that they had seemingly given no thought whatsoever to the needs of the aspies in the audience. He left very early, and so did I. I tried to email them to ask if they can give some thought to it at the next events, but their email doesn't work - they've put down the wrong email address on the correspondence.
So much for the campaign to provide better services and understanding for adults. If our own charity has apparently no clue, what chance has anyone else got? (sigh)
I'll be posting them a letter.
I joined NAS in late 2007. I did find their helpline useful for legal advice on employment law, but it was no more helpful than that available at the job centre. I too was e-mailed and invited to 'I exist' events but I did not reply for the simple reason that I find the whole thing rather crude and belittling. I have undertaken research, but I won't anymore as it was really not very helpful to me.
Like you say, why invite people with AS to an unstructured social gathering! It's stupid. I encountered some NAS fund raisers at work recently. They were doing one of these 'how far can I travel for free' things. They had no idea that I had AS! I turned them down and they were very unflattering.
I think 'Asperger's united' is quite good, but I don't intend to re-new my NAS membership when it expires or do anymore research projects.
If NAS really wanted to help adults with AS they would help us get non stress, social free jobs. NAS makes me feel embarrassed to admit having ASD, so they are failing in their aims.
The Contact page for the National Autistic Society has the following email and online services:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=224&a=3380
Email enquiries
Helpline email service [use this if you require a reply from us]
Letters to the Editor [no replies given but we may publish your letter]
Re-using or translating material from any NAS media
If you want us to link to your website [no replies given]
If you want to link to the NAS website
Send us your real life stories [no replies given but we may publish your story]
Are you looking for research subjects? [postgraduate and beyond only]
Perhaps someone can email NAS, and suggest that it might be helpful for them to pop onto this board for feedback when in the planning stages of these types of events?
So an organisation with £7 million in the bank that employs hundreds of staff and is there to represent people whose primary means of communication is often email.....will not let you contact any of their people, no matter how senior or public-facing, directly by email.... but insist that the whole country writes in to just one central email address. Just so you know.
Anyone want to guess why that would be?
It eliminates accountability, of course.
You would not have enjoyed the last such meeting I went to. People were so crammed in on folding chairs that it was almost impossible not to touch them! Moreover, the smells....all those people....egads.
They do a lot of useful research though, and they are pro ND. I guess they lack the staff a lot of the time. Overstretched.