Aspies For Freedom

As I have posted about previously, Gareth and I went to an autism conference on tuesday, we asked the hosts Autism Cymru about their support for NAAR UK. They told us that they had asked them to contact AFF to discuss our concerns, and they were told that NAAR UK will have an open dialogue with us. I said that we had not been contacted at all, and they suggested that we contact them directly to ask if the money raised would be used towards a cure.

Today Gareth found the website and contact info -
http://www.naar-uk .org/contact_us.htm

As we have had no response from NAAR in the US by email, I decided to try and telephone the number provided.
A gentleman picked up the phone and said hello, I asked if that was NAAR UK, to which he replied yes. I asked if the money that would be raised would go towards a cure for autism. He said that it would go towards research for the causes of autism. I asked if it was separate from NAAR in the US as they do research for a cure. He said it was an affiliate, and that they already funded research in the UK with the Genome Project.
He then asked for my name, and I told him, and that I was from Aspies for Freedom. He immediately said "you should not be phoning this number at all, this is not NAAR UK, this is just for an event."
I then said that I had found the number on the website, so that was why I phoned it for information. I asked if that was NAAR UK or not, he said that it was the number for NAAR UK, and it is a registered company, but it was nothing to do with the autism world and I should not have phoned it. I was very shocked that he said that.
He said that Autism Cymru should have given me another number, and I should not have contacted him, and that it was wrong of me to do that.
I said that I was only using the contact info on the website, he said that the number was only for the event in Windsor Park and was nothing to do with NAAR UK.
I was totally baffled by his attitude, which was very hostile, and I tried to point out that I had merely found it on the webiste and only wanted some information.
He said that I should have told him who I was, which I had done anyway, and that I should never have tried to contact him. He said that he was nothing to do with the autism world, and it had nothing to do with him.

He was shouting down the phone and it left me feeling very shaken. How very different from the "open dialogue" that was stated to Autism Cymru.
Sadly we have seen again the kind of attitude and behaviour that those supposedly "helping people on the spectrum" are actually using to treating people.

Well, look at it this way, Amy, this guy had obviously heard of you and AFF, and he saw you as a threat.  So your efforts must be accomplishing something.   :twisted:

If I were in your position, I'd try to find out who this guy's supervisor is, and discuss this incident with the supervisor (if he/she will talk to you at all).  Keep Autism Cymru informed as to what's going on... maybe someone there will intervene on your behalf, or at the least, it will give them a less rosy view of NAAR.

Well he never gave me his name, but he did say initially that it was the number for NAAR UK, I think that he is Hugh Lake judging by the information on the site. He is the head co-ordinator for NAAR UK.

I will let Autism Cymru know about the response.

Based on the whois data for the domain name, it seems Hugh Lake is the registrant, and he used an email address belonging to someone named Elizabeth Lake (most likely his wife or other female relation). The phone number in the whois record is the same as the one given on the site (and the one Amy called). This suggests that it either was Hugh Lake, or the whois data for the domain is invalid (and therefore fraudulent).

Domain ID104564551-LROR
Domain Name:NAAR-UK.ORG
Created On:24-Jun-2004 17:42:15 UTC
Last Updated On:24-Aug-2004 03:50:32 UTC
Expiration Date:24-Jun-2005 17:42:15 UTC
Sponsoring Registrar:Schlund+Partner AG (R73-LROR)
Status:OK
Registrant ID:SPAG-32874301
Registrant Name:Hugh Lake
Registrant Organization:
Registrant Street1:Fairmile
Registrant Street2:7
Registrant Street3:
Registrant City:Henley-On-Thames
Registrant State/Province:
Registrant Postal Code:RG9 2JR
Registrant Country:GB
Registrant Phone:+44.1491642303
Registrant Phone Ext.:
Registrant FAX:
Registrant FAX Ext.:
Registrant Email:elizabeth@elake.demon.co.uk
Admin ID:SPAG-32874301
Admin Name:Hugh Lake
Admin Organization:
Admin Street1:Fairmile
Admin Street2:7
Admin Street3:
Admin City:Henley-On-Thames
Admin State/Province:
Admin Postal Code:RG9 2JR
Admin Country:GB
Admin Phone:+44.1491642303
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin Email:elizabeth@elake.demon.co.uk
Tech ID:SPAG-32126858
Tech Name:Hostmaster ONEANDONE
Tech Organization:1&1 Internet Ltd.
Tech Street1:Herschel Street
Tech Street2:The Nova Building
Tech Street3:
Tech City:Slough
Tech State/Province:
Tech Postal Code:SL1 1XS
Tech Country:GB
Tech Phone:+44.8708503305
Tech Phone Ext.:
Tech FAX:+44.1753490444
Tech FAX Ext.:
Tech Email:hostmaster@1and1.co.uk
Name Server:NS33.1AND1.CO.UK
Name Server:NS34.1AND1.CO.UK

When I dialled the number I thought it would just be a helpline for NAAR, of the type that would usually be given on a website, this made his reaction more shocking.

Hmm so the pieces are on the board now. I wonder what NAAR are going to do now they know officially know of AFF's exsistance.

I mean up until now AFF's had it relatively easy because you guys havn't come under concentrated attack from groups like Cure Autism Now and NAAR, however that may change and one group might decide to go on an all out publicity campaign against the autistic advocacy movement.

Then again they may not because they don't think you've got the leverage to make any damaging moves that could intefere with their aims.

We know already that autism cymru are aware of us at least from the reaction we got at the conference at first. The attitude Amy got on the phone when she mentioned who she was suggests that NAAR UK have also heard of us. Simon Baron-Cohen is also aware of AFF along with a few other professionals who we have had contact with.

It is fairly safe to assume that some of the major autism organisations (both the general organisations and the pro-cure types such as CAN) are aware of AFF and the neurodiversity lobby. However, perhaps if we can show the attitudes of some of the people in these organisations to the parents and other supporters, they will take that as a threat and fight back.

Looking for a fight huh?. CAN have a large amount of resources to hand and they've also got allies. The thing that made me come back into the game was this Coalition against Autism because I thought they were effectively ganging up as well as pooling their resources.

Added to that I think when some group does make a move they will try to maximise the impact it has to avoid a pitched conflict.

Are you familiar with what happened at Joe's first protest?

Parents with their children spitting at him. They were spitting at an autistic adult, the exact thing their children will grow into. This kind of ignorance is extremely dangerous, we aim to fight it by education. Some have labelled us as "militant" because of this. But we are simply seeking to educate people about the kind of discrimination and ignorance some people on the spectrum suffer from daily. We want to educate people about the human rights abuse that goes on in places such as the judge rotenberg centre (electric shocks being used on children as a means of control). Above all else, we want neurological diversity to be recogonised as being as important as ethnic, cultural. religious or sexual diversity.

I'm not arguing with that. What I'm saying is taking a strategic approach AFF's and the current strength in numbers and resources of CAN and these groups. By going into a pitched fight with the numbers you've got you could loose badly in the short term and in the long term yes that'll be a loss.

Personally I'm a bit of an evolutionary thinker and I think this fight shouldn't be fought on the old fashioned way of education just like most activist groups have done and to be honest most havn't succeeded in.

It should be fought like a business or even better using the art of politics. The winners will be the one's who've got the most to offer the losers will be the ones who have the least to offer.  I also think that CAN can at the moment

However it's fought though the Autistic Advocacy movement needs a lot more resources and members to have a fighting chance against any of the large groups.

" It should be fought like a business or even better using the art of politics. "

Well, I can only do my best, and so can everyone else. At the conference we simply spoke to people, and said our viewpoint, and I think that we got some ideas across.

I can't present myself in real life as a politican might, I am quiet and reserved, and shy of people, that's one difference on the internet, its easier to put views across in a specific way.

-Enter the politician and businessman/evolutionary thinker (along the lines of Ramen Dragon Elok and my own lines)

but at the moment I haven't got the time to do anything massive as I've got a lot of work and things going on for me both academically and socially however there are small things that can be done that can put AFF on the road to have some chance of matching these guys and also in image too.

Right now one strategy I'd say would be worth doing is contacting various "support/meeting groups" under the banner of the Autistic Assembly. Another one would be to gauge the current "state of play" in the Autistic community (I.E how many people are for a cure, how many aren't etc).

OK, time for some historical and global perspective here:

Gandhi was thrown in jail several times.

Martin Luther King was also jailed, was harassed by government agents, and was eventually shot to death.

Civil rights activists in numerous countries regularly receive death threats.

Many supporters of democracy are being jailed, tortured, shot, and so forth, in various dictatorships while you are reading this post.

Amy got yelled at by one guy from NAAR, who appears to be their only official representative in the UK, if I'm understanding Amy and Gareth's posts correctly.  No doubt it was upsetting for Amy, but it's nowhere near the same order of magnitude as the abuse that civil rights activists have historically suffered.  I see no reason whatsoever for us to be intimidated.

Give 'em hell Amy.

Give 'em hell Amy.

Thanks for the support Bonnie.

Yeah that's exactly what I am asking of you 8) . The thing is you go to any battle exposing any side and you will get shot at. No?.

Best to hit CAN with what they don't expect then what they do or even better use a two pronged approach i.e politics and protest . One approach alone is not going to win the war although one approach may win a battle.

Besides these guys when the pressure is on are not going to play by just orthodox rules.



(Debates writing a little sketch about Japanese Kamikaze bombers) but doesn't because I like Japan too much.