Nothing About Us Without Us
Nothing About Us Without Us
This familiar slogan from the disability rights movement is being raised increasingly by autistic rights activists. Autistic people have a history of self-organization in groups like Autism Network International (ANI), Autistic Self Advocacy Network(ASAN), and more recently the London Autism Rights Movement. While the Internet has made it easier for individuals to connect both locally and on a wider scale autistic people also come together in the physical world. Autreat has seen a regular gathering of autistic people and their allies since it was launched by ANI in 1996 and, for those unable to make the trip to America, a group of autistic people based in the UK launched Autscape in 2005. Alongside these annual events there are numerous local groupings with activities ranging from social gatherings to serious campaigning.
When you combine physical presence with a wired community the results can be impressive. Two years ago the NYU Child Study Centre launched the now infamous “Ransom Notes” poster campaign. It promoted the idea that autism along with other neurological disorders was kidnapping our children. Bloggers responded with outrage. ASAN stepped in to coordinate the protests. 22 disability organizations from around the world joined the protest and NYU dropped the campaign.
Earlier this year Action for Children ran a TV advertising campaign that presented autism as a monster that trapped children. The blogosphere was again quick to respond. A parent launched a Face Book campaign which soon attracted a thousand followers, one of whom enlisted the support of Tony Attwood, and organized complaints to the Advertising Standards Council. Action for Children stood by their campaign, which nevertheless ended a week ahead of schedule.
Mention of Tony Attwood reminds me that he is at present on the receiving end of a campaign by ASAN who have launched an online petition to express their opposition to his continuing association with Families of Adults Affected by Asperger’s Syndrome (FAAAS) which has moderated its name (it used to be known as Families of Adults Afflicted with Asperger’s Syndrome) if not its stance that wives and children are the victims of men who use their Asperger Syndrome as an excuse for unreasonable behaviour towards their families.
In this case I am not so certain that public protest is the way forward. It is one thing to use the politics of protest to confront high profile images and messages that damage the public perception of the autistic community. It is quite another to demand that someone change their mind based on public opinion. That requires debate and discussion. I agree with ASAN that Tony Attwood ought to disassociate himself from FAAAS and their use of his name on their website. How we go about it is a question of tactics not principles
This brings me to my final point. How can autistic self advocates position themselves to influence decisions before they are taken instead of having to protest about the consequences of those decisions taken without them? And, bearing in mind the well documented difficulties that autistic people have navigating the nuanced world of social communication, what can we do to help them? Maybe it is they who can help us. Autistic plain speaking could cut through the doublespeak that bedevils the political process.
In the USA the Inter-Agency Autism Coordinating Committee (IACC) that advises federal agencies like the National Institutes for Health (NIH) on priorities for autism research invited members of ASAN onto the committee and took account of their representations. ASAN have also had meetings with the relevant advisors in President Obama’s policy teams.
Things are happening in the UK as well. Parliamentary support for the Autism Bill led to the government setting up an external reference group chaired by National Autistic Society (NAS) chief executive, Mark Lever. The vice chair was autistic adult, Anya Ustaszewski. The input of the autistic adults on the group has helped to shape the public consultation launched by the government that will lead to statutory guidance for local authorities on meeting the needs of adults on the spectrum.
The NAS has come a long way in transforming itself from a parent led group to one that takes autistic adults seriously. A number have been elected to the NAS Council and one serves as a member of the board of trustees. But there is still a lot to do. Even quite able autistic adults can be excluded because they cannot cope with big meetings or face to face negotiations in committees. For others, their difficulties with communication make it hard for them to get their message across. And those with additional learning difficulties are even more disadvantaged.
The good thing is that autistic people are demanding to be heard. Governments, along with other public bodies and autism charities have declared a willingness to listen. No doubt there will be future improvements to the wired world that will help the process. But people have to be willing to create those opportunities. We could start by taking seriously the slogan with which I began this article.
Comment by laurentius rex | May 10th, 2009
Is that a veiled reference to the rather appalling venue we had to meet in Yesterday, and from which I am still recovering?
You also forgot to mention, the World Autism Day belated party at Downing Street to which our organisations were not invited, that was a snub and no mistake, where Autism Speaks were trying to weasel there way into Government influence.
I am not sure how many politicians were aware of our ‘demonstration’ outside, but I think most of the guests were.
Hopefully there will be some video footage on Youtube eventually. (not mine)
Comment by Mike | May 10th, 2009
It was an appalling place Larry and not just for autistics. I look forward to hearing more about your World Autism Day protest.
Comment by abfh | May 10th, 2009
Mike, do you have any suggestions as to how Tony Attwood might be persuaded to engage in meaningful “debate and discussion” with the autistic community, other than by raising the issue in public? Attempts to discuss his Aston/FAAAS associations privately with him (and quite a number of people tried to do so, over several years) resulted in very little progress.
The Cassandra scam, which Tony Attwood is aiding and abetting by means of his public endorsements of Maxine Aston, is not just a matter of abstract differences of opinion. Real people are being harmed and, in some cases, even put at risk of death, as I wrote in a recent post:
http://autisticbfh.blogspot.com/2009/05/cassandras-impact-on-autistic-victims.html
Comment by Mike | May 10th, 2009
I think the debate has to be public. I am not convinced that a petition is going to help, especially as half the signatories are anonymous. The only pupose of a petition is to collect supporters. But you cannot do much with them. A group on Face Book for example cold still gather supporters and provide a forum for supporters to discuss the issues. The comments on your post show how important that discussion is.
I honestly do not know why Attwood is content to be associated with these people and their ideas. It seems to go against so much of what he has written. Perhaps we need to spread the debate so widely that he starts getting asked these questions on a regular basis when he addresses meetings and workshops.
Plus, I need to do my homework. I have never read Aston’s work. So it is off to the library for me. I always feel more comfortable arguing from primary sources even when I trust and respect the opinions of others.
Comment by Harold L Doherty | May 10th, 2009
If only the members of these “nothing about us without us” groups would not try to speak on behalf of other “US”’s for whom they lack any moral, legal or other right to speak.
Sharing a diagnosis, a common neurological disorder, or in many cases a similar diagnosis, or similar disorder, does not give someone the right to speak on behalf of others with the same or a similar diagnosis or disorder.
Apart from parents who actually have the legal and moral right to speak on behalf of their autistic children, and who actually know and care about their children, there are also adult persons with autistic disorder and aspergers disorder who object to the ASAN agenda.
Through overreaching ASAN and similar groups oppress the rights of others.
Comment by Mike | May 10th, 2009
Harold,
a specific example would help or was this just a general rant?
Comment by Kent Adams | May 10th, 2009
Really Harold, you should not fill so threatened by ASAN. My son, like Connor, has “severe” autism. I’d much rather ASAN speak for him rather than some of the “autistics” found on the internet, particularly because they advocate for inclusion, expanded social and educational services etc. I would fault ASAN for a poor website that clearly does not display their advocacy in more clear terms. There are too many clicks needed to get to the “meat” of their efforts and therefore most folks probably give up understanding what they are doing. In addition, the anti-cure rhetoric is a distraction to the real advocacy they are doing. Good advocacy gets very little attention whereas campaigns against high profile, and shallow issues in my opinion, get more attention. I’d suggest issues such as FAAAS relationship with Attwood could be harnessed to grab attention for more important and meaningful advocacy that is usually ignored.
Comment by laurentius rex | May 10th, 2009
Harold you lack moral authority to speak on behalf of anything.
You certainly have no greater legitimacy than I, yet you continue to excercise a self imposed right to criticise what you fail to understand.
Comment by laurentius rex | May 10th, 2009
Well if Atwood does not respect us enough to listen, then he must learn to fear us.
It is question of influencing those who do have persuasive power over him to dissuade him, or of convincing him (if it is only reputation and money he cares about) that he will lose both reputation and money by continued association.
Choose your friends Tony, now is the time to be on the winning side.
Comment by Barbara | May 10th, 2009
“Well if Atwood does not respect us enough to listen, then he must learn to fear us.”
That’s the language of the playground bully and thug, not the language of the activist.
I had great respect for you, Larry. I thought you would be able to argue this through, intellectually.
“Choose your friends Tony, now is the time to be on the winning side.”
Not a helpful or intelligent comment. Just emotional.
Comment by laurentius rex | May 10th, 2009
Shall I qoute you Martin Luther King.
“Morality cannot be legislated, but behaviour can be regulated. Judicial decrees may not change the heart, but they can restrict the heartless”
I think that unless Tony Atwood does pay attention, then he will find himself categorised amongst the heartless.
People whose intransigence causes them to be a danger to the community should indeed have something to fear.
And I do indeed estimate (with a lot of background behind that) That Tony Atwood if he persists will find himself isolated in the losing camp, a group whose credibility will continue to dwindle.
There is a simple solution for him, and if he has any honour then he will take it, problem solved, I will no longer have a beef with him.
I am merely attempting a little forensic psyschology (however you spell that) with Dr Atwood. If those in the public eye do not fear to be held in disregard when they act decietfully and dishonourably, then what sanction do you suggest.
Atwood is in the public eye and he knows it. He cannot to use an expression, continue to run with the fox and hunt with the hounds.
Comment by Barbara | May 10th, 2009
“Atwood is in the public eye and he knows it. He cannot to use an expression, continue to run with the fox and hunt with the hounds.”
Larry, I asked for intellectual engagement. That’s just emotive personal grievance, isn’t it?
So what’s the real argument? Can you please be an activist, again, as you once supremely were? Activism isn’t personal or emotional. It’s about ideas.
Give me your ideas.
Comment by Kent Adams | May 10th, 2009
Barbara,
Larry is certainly capable of defending himself but I’ll let Martin Luther King, in video, defend Larry:
http://www.vimeo.com/2174492
Comment by Mike | May 10th, 2009
Barbara,
I find Larry’s meaning quite plain. Attwood writes and speaks sympathetically about autism (running with the fox), while also maintaining cordial professional relations with people who demonize autistic adults (hunting with the hounds). Those of us who are unhappy with this situation would like Attwood to distance himself from FAAAS and Aston.
Do you have any suggestions that might persuade him? And, if he proves not to be open to persuasion, autistic adults should be free to express their displeasure without being chided by the likes of us.
Comment by Barbara | May 10th, 2009
Right, here’s the deal, Let’s start at the core, Larry and Mike. You are both on the board of the NAS. The NAS actively supports Maxine Aston, doesn’t it? How many papers by Aston are on the NAS website? Have either of you ever objected to that? The sickness came out in the first publication. Who published it? The NAS. Bronwen and I objected to what they subsequently published. Did either of you?
And who used Attwood? The NAS. See the first partner workshops, published and supported by the NAS. When I first met Brenda Wall in 1998, it was all, ‘Frankie Happé and the NAS’. It was so cosy.
Take it back to basics. Accept the part the NAS played and still play in this. I have total respect for both of you, because both of you are amazing.
But you tell Tony Attwood that he runs with the fox and hunts with the hounds? That’s hypocrisy of the very highest order.
The NAS started this entire malarkey off, or didn’t you know? They supported BackUp, Brenda Wall, Maxine Aston and Karen Rodman.
Weren’t you around at the time? Or weren’t you in that silo? I was. I know precisely this entire history. And I know that Tony Attwood was a pawn in a game, and he’s never been able to get himself out of it, through loyalty, and kindness, and gullibility.
NAS, stop being holier than thou. Accept what you did. And if those on the NAS board start making noises, it can help.
Don’t hang Tony Attwood up to dry. The NAS did that. So sort it out. It may be history, but it needs to be heard. I’m sick of keeping these secrets.
Comment by laurentius rex | May 10th, 2009
Mike is not on the board of the NAS
And I am not the NAS I am one board member, who tries to make a difference.
You are not guiltless either, you can say what you like, rail how you like, you can run with the weasels if you like.
Tony Atwood has good things to say, I never said he had not, but it is when he lends his name to the insupportable that I object.
You know this country took a step too far when a former commissioner of the Metropolitan Police started advertising car tyres.
The rot has not stopped since.
Before you start ranting about the NAS do your research and realise the momentum of organisational dynamics, do a little research into business administration (I am crap at that I admit) just stop being a bloody journalist for once. You slate Harry but you are the same, Brian Deer and David Kirby too, it is the poison of the profession that what they profess they dare not confess.
Comment by Barbara | May 10th, 2009
Well, Larry, I just wanted to underline the fact that you haven’t done much.
Get up to speed.I’m not doing journo stuff, I’m doing a PhD which I’ve almost finished, after 3 damned hard years. You really do try to attack the person, not the issue, don’t you?
That isn’t too clever.
Personal attacks on Tony Attwood, or anyone, are pathetic. You let yourself down, Larry, and avoid the question - what did you do about Maxine Aston?
Comment by laurentius rex | May 10th, 2009
Thank you Jonathon Mitchell aka Barbera
Now I must move on, go fish elsewhere I am not taking the bait.
Comment by Barbara | May 10th, 2009
Oh and by the way,I don’t slate Harry. I like him.
I think you may find that the slating is from the opposite direction.
And I have no clue why. Truly. I’m confused. And, although I don’t do this emotion often, quite angry, right at this moment. And very scared,as to what he may do. I am frightened.
I thought he was a friend. I believed that he was.
Comment by Barbara | May 10th, 2009
“Thank you Jonathon Mitchell aka Barbera
Now I must move on, go fish elsewhere I am not taking the bait.”
That is foul. Really. Unacceptable.
I’ll pass that on. I don’t think any woman should accept that, Larry.
That’s a step too far.
Comment by Barbara | May 10th, 2009
I can’t forgive that.
Comment by Barbara | May 10th, 2009
This guy is advising the NAS?
That’s unbelievable.
Comment by Barbara | May 10th, 2009
Have copied and pasted.
Whewww. Still reeling…………..
Can’t get my head around this……….
Comment by Barbara | May 10th, 2009
Passing your comments to the NAS. And commenting.
This isn’t good,Larry.
Comment by Mike | May 10th, 2009
Some clarification is in order. This blog is not an NAS blog. I express my own views here, not those of the organization. Also, Larry is correct. I am not a board member. i am a member of the NAS Council, which elects the board and acts in an advisory capacity. Like the NAS, its council is a broad church representing all aspects of the autism community from autistic self advocates to those who seek to cure their children using biomedical interventions.
This explains the NAS history of fudging or abstaining on the issues that divide the autism community. The NAS is changing, has changed dramatically in recent years, to reflect the concerns of autistic adults. We are not there yet.
The NAS website is a mess. It is currently being redesigned and all the content is being reviewed. If there is content that you feel should not be there let me have the URL and I will pass the details on.
I would hope that we have all learned and changed over the years. It does not help if we are harangued for our alleged sins of ommission in the past in order to deflect criticism and discussion about the conduct of public figures like Tony Attwood in the present.
Comment by Mike | May 10th, 2009
Barbara,
my blog, my rules.
Your attacks on Larry are breaking the rules. It stops now.
Comment by Clay | May 12th, 2009
FWIW, I just checked the ASPIA website, and found that the most offensive pdf file (I forget the name of it), has been removed, and I understand that was accomplished through Barbara’s communication with Carol Griggs. I KNOW it was there yesterday, but today it’s gone.
Just last Monday, I attended an Asperger support group, because a Rudy Simone was giving a speech. I was interested, because the foreword for her new book was written by Maxine Aston. It turned out she wasn’t the ogre I expected, I’ve since emailed with her, and she disavows any “relationship” with Aston or FAAAS. She had found Aston’s book “Asperger’s in Love” to be helpful to her and her BF, and called Aston to say so, and mentioned that she was writing her own book. Aston offered to write the foreword to it, so that’s how that happened.
I hope this brouhaha is settled soon, because of old loyalties and friendships, old insults and animosities, this threatens to tear the fabric of the autistic community. Oh,
and my own belief is that Tony should throw Aston, CADD, and FAAAS under the bus.
Comment by Mike | May 12th, 2009
Thank you, Clay.
Comment by Clay | May 12th, 2009
Re Rudy Simone - I should have said that not only was she NOT the ogre I had expected, she was really quite nice, and her book, (which I’ve ordered through Amazon), “22 Things a Woman Must Know - If She Loves a Man with Asperger’s Syndrome”, appears to be something that could be quite beneficial for couples looking to improve communication. I won’t know until sometime after June 6th, but at least I HOPE there’s nothing CAADish about it!
Comment by Barbara | May 12th, 2009
Good day with Tony today. Just got back and exhausted. We worked out what’s to be done for total fairness to everyone. It will be done.
Comment by Clay | May 12th, 2009
As Ross Perot once said, “I’m all ears.”
But seriously,
I’m sure we’re all anxious to hear what he will do. Thanks
for your efforts, Barbara.
Comment by Dasiel | July 22nd, 2009
NO STARSHIP: AUTISM IN THE ‘REAL’ WORLD
I don’t know what full details are. But, I really need help. I’m homeless, a citizen of the USA, and I cannot make anything happen for myself in the world. I have severe Crones disease/Irritable Bowel/MANY food allergies. People are everywhere, and there is only one of me. They’re all like gods, and I’m just a man. Autism is the result of three factors:
1)Possession of some normal sensibilities,
2)a feebled dynamic autonomy,
3)positive neurological compensations for the disability (much like the heightened senses of blind persons) of a type which allow a cognitive escape from the external contexts because of which the disability exists.
The disability is in the interaction of 1) and 2). The autism is the existence of 3). The disability may be extreme while the compensations may be of a normal type precluding escape. I have the disability to extreme, but not much of an escape, so I am conventionally seen as only mildly disabled per autism being thought of as the actual disability. Autism is not the disability. Autism is the escape from the contexts because of which the disability exists. The US Space Program would at least try to head back to Earth if it found outerspace suddenly monopolized by a race of excessively friendly star-faring aliens who, despite being so advanced in technological knowledge and power, continually failed to see just how flimsy are our own spacecraft. I have much more to say about autism which is very important-yet-unknown-to-neurotypicals. But, I am like an alien stranded here, and everyone keeps assuming I’m human since I LOOK human; so, since I have not even a disabled starship to inspire anyone to suppose that I have anything much to offer THEM, I’m sent no diplomats. No starship: no diplomats.