In Australia the Autism Asperger Advocacy Australia (A4) steering committee has locked out all members diagnosed with Autism Spectrum disorders. According to a notice sent by the Australian ASAN Chapter, they were notified by their members today that they have removed a dissenting minority on the A4 steering committee – which includes oddly enough every autistic person on the committee.As of right now the only solid information we have is a statement from ASAN:
AUTISTIC SELF ADVOCACY NETWORK
AUSTRALIA
20/5/09A4 LOCKS OUT AUTISTIC MEMBERS
STATEMENT CONCERNING A4 – AUTISM ASPERGER ADVOCACY AUSTRALIA
ASAN AUSTRALIA understands from its members that as of today all Autistic members have been exclude from the Steering Committee of A4 (Autism Asperger Advocacy Australia) which has now been renamed the A4 Advisory Group. Convener of the A4 Advisory Group Bob Buckley states in an email to all A4 members:
“A majority group decided to separate itself from a minority dissenting group (formerly in A4 SC) who do not accept and object to long-standing polices and practices of the A4 SC.”
This minority dissenting group just happens to contain all of the people with a diagnosed Autism Spectrum Disorder that sat on the A4 Steering Committee up until 18/5/09. This minority group has long been battling to be part of the national voice that is A4 and now finds themselves excluded from the very group that once claimed to represent them.
ASAN AUSTRALIA finds this situation unacceptable, reprehensible in fact. We suggest that in light of this move A4 not be seen as a legitimate voice for those on the autism spectrum who can speak for themselves.
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{ 31 comments }
Which is why it is so important to get us onto the governing bodies of such organisations rather than hope for the tokenism of steering and advisory bodies, because once on the governance committee then one cannot be excluded.
Which reminds me to get my statement sorted out for the NAS as I am up for re-election this year and the competition gets hotter as I am far from the only aspie in the game nowadays
Is the article correct in saying that this organization separated itself from “a minority dissenting group (formerly in A4 SC) who do not accept and object to long-standing polices and practices of the A4 SC.”
Why shouldn’t an organization be permitted to focus on the long standing policies and practices of the group’s majority?
Must the majority surrender to the wishes of a minority which acts contrary to policy? Surely the minority could form its own group to pursue its own objectives and form its own policies and procedures.
@Harold:
Why shouldn’t an organization be permitted to focus on the long standing policies and practices of the group’s majority?
The answer to your question is simple. The organization at hand claims to be an advocacy organization for those with Autism and Aspergers. How much advocacy can you do when you lockout those you are advocating for?
In the UK the NAS is a charity, and the beneficiaries are e autistic people, therefore the society is not in law set up for the benefit of parents is it? I thought you knew law Harold.
For what it is worth Harold I was elected to my position by a majority of people who were not autistic but parents, so what does that say?
Your son’s welfare lies not in your perpetual stewardship as a parent, because you are going to die one day, the interest of any society for autistic people should be in the future not in the past.
I might also tell you that this notion of a seperation between parental interest and autistic interest is a false one, because as I pointed out at the most recent regional forum, although I might not be a parent myself there are other autistic councillors who are.
As the oldest autistism society in existance, I think the NAS does have something to demonstrate to other autism societies elsewhere, that good governance does not mean the exclusion of autistics.
I am not saying that as a member of the board or a councillor, I am saying that as an ordinary member of the society, for though when I joined it I asked what it was doing for me, I am now more concerned with what I am doing for it.
That is a progression and experience that is being denied.
I am there because I am competent to be there and my being there means that I have to take account of the whole autistic spectrum. I don’t know how many times I have to tell you this, but there is nothing in my makeup that makes me less responsible than a sibling or a parent. (oh and I am a sibling BTW even if my brother was never diagnosed)
“Why shouldn’t an organization be permitted to focus on the long standing policies and practices of the group’s majority? ”
If the long standing policies and practices of the group’s majority exclude a minority group then they are silencing voices. If the group claims to represent the minority:
http://a4.org.au/a4/abouta4
then they have an obligation to ensure that the group they represent has an equal voice in policy making. This is not just about bums on seats or in this case, fingers on keyboards. It is about ensuring that the group has policies and protocols which allow equal participation. Did they do that?
This is about each of us. We have all been excluded from decisions made about us. I think it is time that organizations which represent autistics understand that we need an equal voice in determining the laws and structures which are supposed to support us.
This is completely untrue, Zac.
I have spoken with Bob Buckley as a part of my efforts to get an enquiry going here, and the real reason why this minority group was kicked out was because of a personality conflict that just could not be resolved. Nothing to do with issues at hand as such. ASAN Australia need to stop bleating because they are harming their own agenda and that of ASAN itself. Running around complaining about personality conflict will do nothing to help anyone.
Australian advocacy groups should be working together, and ASAN Australia needs to take a good long hard look at itself trying to slam A4 in a box it doesn’t belong in.
I think Australian groups who want to fight would be better served targeting the AVN and Meryl Dorey – not A4.
Timelord,
While I see your point of view – I think its important to realize that personality conflicts happen in any organization. My question is why would everyone who has autism be having a personality conflict with everyone that does not. I think this question needs to be answered – because it seems to hint of more than a personality conflict.
Further information:
Two non autistic members of the committee have resigned. They have offered no formal explanations of their action, but I think it is significant that after the three remaining autistic members were locked out, two people who are known for many fair minded words and actions have left the organization they worked so hard to promote.
Hi Timelord,
It is great to see that you contacted Bob. I think it is important to hear both sides of the conflict, but I would ask you to reflect on this. If discrimination really occurred, do you think anyone would state, “Yes, this happened. We locked them out because they objected to long standing policies and practices which allowed some members of the committee to make unilateral decisions.”?
Discrimination did not occur. This is the point. ASAN Australia is trying to promote this as discrimination when it’s not. When I last checked – personality conflict was not discrimination in any way. And from what I understand, it wasn’t just an objection to long standing policy. It went beyond that – and Bob for one was fed up with it and really I don’t blame him given the way he sounded when I asked him about the issue. The whole thing exhausted him badly – almost as though ASAN Australia didn’t care.
@Timelord, it seems to me your just believing Bob at what he says at face value.
Have you spoken to the people involved? The personality differences are an excuse for the unfair actions of this group. Get both sides of the story and you may be able to see that this was indeed a case of discrimination against some members who simply disagreed and were excluded for stating their opinions. That reeks of dictatorship to me.
This is worry sum to me as it reminds me of what Autism Speaks did to this very website.
http://www.aspieweb.net/aspieweb-being-bullied-by-autism-speaks/
King Larry
Save your silly insults. You demean only yourself with such efforts. You offered no evidence to support your argument. Your argument itself is weak. The exclusion of people who oppose the goals of an organization is not illegal in any legal system that I am familiar with.
As for your comment that you have to take account of the entire spectrum I have never seen you do that in any of your public comments on any forum. Nothing I have read from you leads me to believe that you have any familiarity with the needs of low functioning persons with autistic disorder and profound developmental deficits. No where have you indicated how you would have acquired the experience to represent these human beings with whom you have so little in common.
As for representing my son I have been part of a group who advocated for government funded, pre-school intensive early intervention. The system we have in place was reviewed by Dr. Eric Larssen who recommended our model for consideration by other Canadian provinces.
With others I have also fought successfully for autism trained Teacher Aides and Resource teachers for our schools here in New Brunswick Canada. I have also advocated extensively for modified learning environments designed to accommodate the needs of the individual child with autism. My son receives his instruction in a separate small room and enjoys facilities such as an Olympic pool, a field house style gymnasium (you can see video clips on the sidebar of my blog), the library, the kitchen and other common areas of the school where he can be around other children. When I take him to school I have had many occasions when other children come up to him and say hello and greet him by name.
I have also fought with other parents, successfully, to reverse a government decision to close a tertiary level pediatric care rehabilitation service for autistic children in our province. The service which amongst other things helped autistic children cease such self destructive, dangerous behaviors as severe head banging and self starvation, was to be closed because the overwhelming demand for the service was such that the centre’s other rehab services for brain and neurological trauma cases was threatened. We, as parents, fought successfully to reverse that decision.
I am currently working with other parents to upgrade New Brunswick’s residential care and treatment facilities for adult autistic persons. It is a huge battle and like any other parent I am well aware of the need to ensure systemic services are in place for my son and other autistic persons after I can no long do so or after I am deceased.
Throughout most of the advocacy efforts I describe above our organization included a gentleman with Aspergers on our board. His name is Jason Oldford. Jason testified before the Canadian Senate committee that examined autism treatment financing in Canada. He is highly intelligent and extremely well organized. Jason was a huge asset in our advocacy efforts.
Unlike the persons mentioned in this comment Jason supported the advocacy goals of our organizaton and together we all accomplished much. No organization, and as a lawyer I am involved, literally with corporations, government departments, trade unions and Indian bands (now called First Nations in Canada) can function when its board contains a group opposed to the fundamental goals of the organization. Being autistic, as Jason Oldford has demonstrated, with his commitment and actions, does not mean that one has to be contrarian. It does not mean opposing the right and responsibility of parents to represent their children’s interests.
Harold, it’s silly comments like the above that makes me suspect that you don’t actually know who the main advocates of Neurodiversity are, nor do you spend any effort making attempts to find out what they actually do.
As a simple google search would have indicated, had you bothered to ever do one on Larry, you would have found that he is involved with several local, regional and national autism/disability associations, and has advocated for local, regional and national services, including researching the use of video as a therapy tool. He has, in essence, done all you have (with others) and then some (by himself).
Although many may consider you to have done good work (with others) , to argue that Larry has done nothing or knows nothing is an arguement that is easily contradicted by the most precursory of research.
Anyway, that’s enough about you, let’s get back on topic:
“A person’s conduct in helping the board or organization achieve its fundamental goals is critically important. If a person operates to undermine the organization’s fundamental goals they should be removed.”
Correct.
Are fundamental goals the same as policies and practices? No, they are not, neither by logic, definition, or the likely organisational constitution. Come on Harold, you must have done at least a smidgeon on organisational structure. You must already know that an organisations constitution – if written well – allows for change of policies and proceedures (and likely stipulates maximum periods between reviews) without a re-write of the organisations goals.
One can easily adhere to policy and practice yet be in contradiction of organisational goals. Also, one can oppose policies and practice as being contrary to organisational goals.
A classic example of this is the current trend for referring people with learning disabilities to learning disabilty services. Sounds totally reasonable, yet it is in direct contradiction of law, DoH policy on discrimination, HPC standards and institutional policy. A person can only be reffered to an LD service on a needs-led, clinically indicated basis. Mere diagnosis of LD is not enough.
This is a example of a longstanding practice that is in direct contradiction to organisational goals, yet it is so engrained as to illicit confusion and even hostility when challenged.
This is nowhere as difficult to understand as you appear to be finding it.
AspieWeb Admin
Having an autism spectrum disorder diagnosis does not entitle a person to disrupt the functioning of an autism advocacy organization. Your comment seems also to imply that the parents of autistic children are not authorized legally or morally to represent their own children. Autistic persons who are sitting on a board while they share some aspects of the life of lower functioning adults also have profound differences from autistic children and adults with severe intellectual and communication deficits. Such persons would ordinarily be represented by their legal caregivers.
As I said in my response to King Larry (Laurentius Rex) I have worked with a gentleman with Aspergers who helped us achieve results for our children and for adult autistic persons. Being autistic alone does not qualify one to sit on a board. A person’s conduct in helping the board or organization achieve its fundamental goals is critically important. If a person operates to undermine the organization’s fundamental goals they should be removed.
Zach I don’t agree with you re Autism Speaks. What they did to you was far worse than this because it involved direct legal threats. This issue doesn’t. And in your case – you were in the right. ASAN Australia on the other hand are not. And I’m talking about the way they are conducting themselves in the wake of what occurred, not the actual occurence.
Hi All,
I am now in a position to add more information to this discussion. The author of the letter below has given me permission to post it and for that, I thank her. Her letter makes clear some of the issues that are in the public domain. Of course there are more, but they are not available at this time.
To the Convenor of A4
A post has appeared recently on the ASA forum website of the recent circumstances of locking out Steering Committee Members with an ASD.
I am writing in response to the post as a private person and member of A4 and not in the capacity being an Office Bearer of Asperger Services Australia. I am a parent of a 21 year old son and have volunteered on the Board of Management and other positions at ASA for the last 15 years.
Although I joined initially the A4 group in 2002 at the Inaugural World Autism Conference A4 has done nothing to increase the support services for my son. I think we all had face in Ms Judy Brewer Fisher to be the Convenor of the Steering Committee at the time due to her connection with the then Government and her enthusiasm to bring the attention of ASD to the then Government.
My concern is that over the last 7 years that A4, which I believed was to become a lobby group to lobby the Federal Government for services for ASD, and it appears still has not developed into a statutory entity, ie being incorporated or otherwise to become a peak body speaking on behalf of all concerned with ASD. The Steering Committee was well located to be close to Canberra and the Government sources. At the conference I attended the AGM of the then Autism Council of Australia in Melbourne and I found to my horror that they had been in existence for almost 40 years and nothing had been achieved to advance services for Autism. A group of parents were most upset that the Autism Council was ineffective to people with Autism/Asperger’s.
Since Autism NSW revamped itself and other Autism organisations, new CEO’s of the respective State Autism Organisations have joined the Council now known as Australian Advisory Board on Autism Spectrum Disorders. Only invited members are allowed to join. ASA has not attempted to join this group due to the exclusion clause in their policy nor has ASA been invited to join as an incorporated body with over 700 members.
I read on the A4 website that A4 was ….”acting to complement the work of the Australian Advisory Board on Autism Spectrum Disorders”… If this is the case, is A4 associated with the Advisory Board and was it acknowledged as such? I cannot find any reference to that on the website it only shows the State Autism Organisations as members and no other organisation is part of it or associated with the Advisory Board. I can only assume that A4 is not recognised as an entity to complement the work of the Australian Advisory Board as stated on A4’s website.
I assume A4’s Steering Committee was structured by governance and accountability to its members. It would have engaged office bearers and members on the Committee. I am not aware of how many members where part of the Committee, which is my fault not taking note of the proceedings. I have never received any Minutes of any decisions to be made by A4. As an incorporated body by law it is required to work under the basic rules set down by the Office of Fair Trading and/or have a constitution.
Steering Committee Definition
A group of high-level stakeholders who are responsible for providing guidance on overall strategic direction. They do not take the place of a sponsor, but help to spread the strategic input and buy-in to a larger portion of the organization. The Steering Committee is usually made up of organizational peers, and is the combination of direct customers and indirect stakeholders.
As a member of A4, the first notice I received was on 20 May of the changes of name and changes on the Committee. IMHO the Convenor of the Steering Committee had the duty to inform the members of A4 of any upcoming name change or change of direction if this what is going on. At no time have I been informed of any changes to take place. As far as I am concerned, I am a member of A4 and I should have been informed of any changes that the Steering Committee is suggesting and it is my privilege to stay as a member or leave the membership, if A4 does not reflect my view or direction the Steering Committee is taking without my knowledge. Although I have not kept in contact with A4 I cannot recall that any of this was discussed or advised via the newsletters.
IMO A4 is an email group, where a dedicated group of volunteers have joined the Steering Committee and has taken on the task to lobby Government to support development of services for ASD, but has failed to develop the lobby group into an entity to have political clout to make services happen.
Although I read in the A4 newsletters over the years of lobbying, it seems that the Convenor was not effective and I assume that the committee members were starting to get nervous about the direction the Steering Committee was taking, if any. I am not privy to the Steering Committees disagreements, but from the Convenors email on the 20 May it must have been serious.
I am supporting all members of a Steering Committee, as I am unable to join the Committee due to my own commitments on the ASA Board of Management, but agree whole heartedly that any committee of any organisation should have representatives of people whom they represent on any Board, in this case ASD. I know personally of the calibre of expertise several ASD A4 Steering Committee members have and acknowledge their contributions made. I also acknowledge that is appears that the expulsion of a minority group has been very unprofessionally handled by the Convenor of a National Steering Committee.
As I am not aware of the Steering Committee’s governance and what rules or guide lines were in place, I would like to ask these questions:
Did any documentation exist which included clauses of appointments of steering committee members or removal of them? This procedure should have been adhered to. There must be a clause giving reference to what constitutes a quorum to remove a committee member, it must indicate the circumstance when and how and why and a member can be removed? I think these questions should be asked of the Convenor and should be provided to all members of A4 including the ones that seem to have been locked out without notice.
For A4’s Steering Committee to keep face and professionalism I urge the Convenor to release the circumstances of why a minority group has been voted out of the Steering Committee without notice. Would the Convenor also please explain to all A4 members, why A4 members were not notified of the changes to take place, ie name change and I assume new directions. We as members need to be informed of the Steering Committees intentions and make sure that the Steering Committee is a true representative of its members for Government lobbying. Having read the member notification on 20 May at this moment it seems that the Steering Committee is unworkable and it is difficult for the membership to assess the value of being a member.
I am pleased that the Convenor was able to be involved and being part of the new government initiatives supporting Early Learning for the upcoming generation and thank him for that. Due to my many years of volunteering with Asperger Services Australia and my son’s age, I am very aware that there are still no services available for young adults and adults with an ASD in Australia.
I request that A4 Steering Committee urgently supply the information to my questions above to all the A4 members so that we are informed of the proposed changes, intentions of directions and the circumstances of the minority group having been voted out without notice.
Yours sincerely
Stefanie Evans
Member of A4
See, now this is the sort of conduct that should be engaged in if there is a problem with A4. Nice and calm and concentrating on real issues – rather than going down the discrimination line. Kudos to Stefanie for providing her view in this way.
Harold do you have miraculous access to my offweb life?
That is where you find your evidence, not in my utterances in the blogosphere which hardly do justice to any of us I suspect. I see no evidence that you are any more representative than I of a sector of the population you so manifestly do not belong to in any shape or form (unless you are hiding your own secret dx) you destroy your own argument.
Your knowlege can only be of the biased and illiterate kind, for that is all I have seen of you.
If I succeed to a third term on either Council or Board of the NAS it will be because parents have voted for me, because I display competance both in governance, and in an understanding of the issues that face autistic people in this country. Are you really aware of where the NAS is at, at the moment in terms of ensuring that autism is well on the UK political agenda.
I do not sit on the board because I am autistic alone, but because I have long history of involvement in disability organisations, and bring a broader understanding than autism alone. Not only that I am fully competent to handle the ethical, financial, and administrative issues that a board regularly deals with having done so for nearly 6 years now, during which time I have aquired both undergraduate and post graduate qualifications in Autism, which require me to have had some practice as well as theoretical knowlege.
Discrimination is very hard to prove, because not only do people not usually openly call it discrimination, they usually do not even see it. Regardless of intentions, if one demographic group is systematically excluded from decision making by another, then there is some sort of discrimination involved.
I’m not familiar with this particular organization, but there may be problems with how information is exchanged, or the level of detail people are allowed to go into in order to clarify issues.
Discrimination, in my personal experience, can very quickly turn into “personality conflicts”, especially when the majority do not see their own biases.
It seems to me that when autistic people are excluded en masse from forming policy that affects autistic people, those who exclude them are ethically obligated to figure out what’s going wrong. Because if autism organizations can’t include autistic people, then how can anyone expect society to include us? And, ultimately, inclusion is the goal. So conflicts like this should be taken as training runs for the real world, not allowed to spiral out of control.
A4 did the right thing. We can’t have the inmates running the asylum. People with brain damage need to be told to be quiet so those of us who do not have brain damage can do what is best for them.
My Best,
I have to ask you to quit with the baseless attacks on Autistic People. It has been proven scientifically that vaccinations do not cause autism. Calling individuals like me as someone with brain damage is at best insulting. You are welcome to make constructive commentary, but insulting commentary will result in you being barred.
Zach, he’s desperate for attention because people in power are ignoring him (and rightly so).
Zack,
It was proven ten years ago that vaccines ARE the cause of autism. Pointing out facts is not an attack, Zack.
Being dx’d with a mental disorder is not something to celebrate or take pride in. It’s a reason for you to sue the people who caused your condition.
Mr Best,
What facts are you referring too?
I see my disability as a gift from God and per Paul’s instruction I take it in stride and good cheer.
[NOTE: This comment has been deleted due to a terms of service violation]
“@Timelord, it seems to me your just believing Bob at what he says at face value.”
(Taken from further up)
No, Zach, that is not correct. Bob actually barely told me anything. The majority of our discussion was about seperate matters relating to my efforts to get an enquiry going about all the issues relating to ASD’s. We only briefly touched on the subject, and I could tell he was tired of the whole thing and I didn’t pursue detail. All I did was ask myself why he was tired and what I have said was my conclusion.
Are you sure you aren’t judging this on face value yourself – based on what ASAN Australia has said? It is not uncommon for such disputes to have fault on both sides. I’m not saying that’s the case here. All I am saying is that within one country – especially one as small in population as Australia – it’s a bad idea to blow an advocacy group (any advocacy group that is essentially on the same side) as ASAN Australia is trying to do to A4. I have issues with a couple of smaller organisations in Australia, but I don’t do that despite my tendency to get extreme when I’m angry (as you would know). I reserve that for those who deserve it – like Autism Speaks, Generation Rescue et al, and individuals like JBJ and others listed as Aspie Enemies on my website.
If I can get the enquiry off the ground – A4 and ASAN Australia will get equal access and be able to express their respective views in their own way. That would be the whole point – and always has been since I first tried to get this thing going. Infighting – no matter who is at fault – is not on. A4 have stayed quiet, and I think that’s the right thing to do. ASAN Australia should move on, and concentrate on their own agenda as they see fit. No one is stopping them from doing that – certainly not A4.
Representatives from A4 have declined to comment, so I have to go with what I have.
Furthermore your beef with ASAN is well known, and I believe this disbelief in the facts is based on your beef with ASAN.
John Best, you say that autism is brain damage and so I’m going to show you just what can be done with a brain “damaged” by autism. Steven Spielberg was diagnosed with Asperger’s syndrome and he’s made all sorts of excellent movies such as Schindler’s List, Jurassic Park, and the four Indiana Jones movies. Now let’s look at you, the member of the neuromajority with the superior Aryan brain. You’ve created nothing except bigoted remarks about how we’re all “damaged” by autism and an autism hate site. Tsk tsk tsk. Imagine how much you could accomplish if you spent even a fraction of that energy improving yourself and creating something good rather than spreading crap about a group of people simply because they have a different neurochemistry than yourself. Face it. Insulting others won’t make you any better. You’ll be in the same spot you are now and a lot more people will hate you, too because you’re just being a bully.