Nothing is decided here

3 Jun

I’ve done a lot of thinking over the last couple of days. I’m trying to get my head around the events and make some kind of sense out of them before I make any decisions on my own future association with neurodiversity and in particular the Hub.

I’ve read and re-read a lot of the threads and comments that preceded and also followed mine and I have come to a few conclusions that have not made me happy in any way but I intend to speak my mind.

The first conclusion that I have come to is that Larry is a pseudo intellectual poseur. I’ve looked carefully at what he has written both now and in the past and applied his own criteria to his words and actions. I find him duplicitous – dishonest and narcissistic.

This does matter. Larry makes some strong allegations. It is these allegations and his subsequent behaviour that led me to my conclusions about him.

A prime example of Larry’s purposeful misinterpretation lies in this comment in which Larry berates me thusly:

…the battle is not being fought or won on the scientific front it is a political battle, and economic one, about education, welfare, employment rights, housing, you name it. Scientists are a small cog in a much larger machine and the media is where the battlefield lies. NT’s are not the heroes in this battle either.

I was very puzzled by these words as the post Larry was referencing made no claim that the science of autism was ‘the battle’. I also found his comment that ‘NT’s are not the heroes in this battle either’ bizarre as I don’t think I’d even brought neurology into the post. Larry had built himself a couple of strawmen which he could make himself look clever with by taking down. This was just needless narcissism.

Next, Larry made a post on his own blog in which he states:

…I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan “nothing about us without us”

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are ‘good parents’ who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line “but you can speak for yourself my child cannot” they run the risk of effectively taking our voice away, because we are the ones with the condition?

I tried to engage Larry on his blog about why I believed he was right and wrong (something I still believe). He is right that there should be ‘nothing about them without them’. He then infers that there is a problem associated with this statement originating from some parent blogs in the Hub. He then goes on to expand on his comment on my blog about how vaccines/mercury/science is not the main fight. He closes by saying that ‘the message’ should come from ‘us’ not ‘them’ (parents).

All of this was couched in Larry’s usual pontificating prose style. At no point did Larry ever mention any specific examples of these parent blogs he was so concerned about. He makes no explanation or examples of blogs in the Hub that abuse the notion of ‘nothing about us without us’.

I was concerned about this enough to want to write my own blog entry about it and try and get as many views as possible, particularly from autistic people.

During the course of the comments I read some of the statements Larry had made on Steve’s blog – a harmless enough post Steve had made promoting a few of the things going on. This was Larry’s first comment:

I happen to believe in the promotion of the case of autism from an autistic viewpoint contra mundum and in spite of everybody. This is Cosa Nostra, our thing, autism advocacy will only ever be advanced by ourselves speaking for ourselves and so I don’t go a bundle on NT’s even if they are on our side, being promoted to hero status.

Again, Larry seems to be building strawmen for himself to knock down. No where in Steve’s post did he advance an opinion that promoting the case of autism should _not_ be made primarily by autistic people. Nowhere did Steve refer to anyone as a hero.

I left that whole post taken aback by the use of the phrase ‘cosa nostra, our thing’. It seemed to me that Larry was claiming that Neurodiversity was solely the province of autistic people. This opinion was reinforced when Larry followed up his first comment on Steve’s blog with this:

Your blog which I have commented on talks about parents, it seems to me that neurodiversity has been hijacked.

Now I was genuinely alarmed. Firstly by the thought that autistic people might think that parents on the Hub was hijacking the issue of neurodiversity but even more so by Larry’s obvious and growing inference that neurodiversity was strictly something to do with autistic people and no one else.

That bothered me a lot. It is most certainly not what I thought neurodiversity was and most certainly not how I had had neurodiversity explained to me.

It was at this point that I first began to suspect that there was considerably less to Larry than I had ever thought. However, I asked in my next comment if autistic people would tell me their thoughts. They were pretty much in line with my thinking. Four commenters who are autistic essentially said that autistic people should lead but they were very happy with how the Hub worked.

So now I was perplexed. What was _really_ going on here?

Larry’s next few comments were about his personal history with the disability movement and how it evolved. They seemed to be an exercise in meaningless verbiage.

I still had no idea why Larry felt that neurodiversity was solely something that belonged to autistic people or what specific thing(s) had happened to make him think parents were taking over the agenda. The opinions of the other autistic people who had posted seemed to reflect my bewilderment. In short, everybody agreed – as they always had – that the agenda of autism advocacy should be set by autistic people.

Larry’s next comment simply added to the strawmen.

What is worrying is when the outside world, the press will seek out non autistic representatives of this blog world to represent what neurodiversity is about.

The autism hub is not the be all and the end all of neurodiversity anymore than the aut-advo list is the sum total of autistic self advocacy.

Again, it is clear from the first quote that Larry firmly believes that neurodiversity is the sole province of autistic people. His second quote is a total strawman – who ever claimed that the Hub was the be all and end all of neurodiversity?

By this point I was getting frustrated and increasingly annoyed at Larry’s evasion. His further comments only served to increase that annoyance:

As far as neurodiversity not being an autistic only thing, that is a comment I have been making for sometime with my dyslexic hat on.

This is at direct odds with Larry’s previous statements such as : _”What is worrying is when the outside world, the press will seek out *non autistic representatives of this blog world to represent what neurodiversity is about*.”_

It was becoming increasingly clear to me that Larry was being evasive and dishonest when representing his own opinions. I had made the point numerous times by this time that Larry was failing to take into account the fact that neurodiversity was _not_ solely about autism, that there were lots of other ways of not being NT and also that there were plenty of bloggers on the Hub that were both autistic _and_ parents.

All in all, I asked Larry about eight times to provide examples of what he was talking about e.g. where bloggers on the Hub that he knew were definitely NT were trying to wrest the agenda away from autistic people. He never did.

There was plenty more bloviating passages of prose about the history of the disability movement but that was about it. There was – after I pinned him down – an admission that:

neurodiversity does not belong exclusively to autistics it is an evolving culture

Which was a great relief to hear.

However, I’d reached a pretty firm conclusion by this time on what Larry’s motivations were based on his words and deeds. He is an attention seeker who is annoyed that he isn’t the story. Throughout this entire episode he has made accusations that he is unable to backup, he has switched positions when exposed in his illogic and has demonstrated a nasty tendency to turn neurodiversity into The Larry Arnold Show.

The final straw for me was when he told me that the work that some of us had done with mercury/vaccines was actually misrepresenting autistic people and/or neurodiversity.

Since than I have been inundated with email, primarily from autistic people, telling me that my suspicions are correct. Larry like to ensure that Larry is the show. These are people who have known Larry online I’ve also heard from one person that Larry comes from a philosophical perspective that likes to blow things up and then see whats still standing to work with. That isn’t a philosophical perspective, thats just stupid.

Lets boil down Larry’s actions and words into a nutshell. He invented a problem and then couldn’t back up his claims. The guiding principles of the Hub are laid out on its homepage. If Larry or anyone else can show me where there is a growing cadre of parents abusing those ideals then we can act. Until then, the only issue is how Larry deals with his tendency to overblow nothings into somethings in order to bask in the attention.

Think I’m being too harsh? Well, I’m just emulating Larry and trying his trick of pretending everything is a pseudo-intellectual exercise in destructive philosophy.

Larry once said:

As for what people consider people to be, the evidence is in the actions not the protestations of innocence.

Which I’m guessing is his way of saying ‘actions speak louder than words’.

This parent blogged about the Judge Rotenberg Center.
This parent blogged every time an autistic child was murdered.
This parent blogged when quacks abused autistic people.
This parent blogged when autism was misrepresented in the media.

Those were this parents actions. I’m not sure what Larry’s were.

NT Parents cannot be leaders when it comes to autism advocacy. Did they ever want to be? Were they trying to be? No. I’ve seen nothing that would indicate they were.

The events of the last few days will have an impact. This was played out – and will continue to be so played out – against the backdrop of the web. The web was the enabler that brought autistic people and the parents of autistic people together. As this plays out, the web will record everything. Parents who ‘found’ neurodiversity via the web will find this too.

Right now we stand at a crossroads of opportunity. Right. Now.

Autistic people have had a horrendous time in the past. I know as much from reading the emails and blogs of those who survived it. They have been let down by parent organisations time and again.

But that was the past. At some point autistic people who do not trust parents are going to have to start. We are not those same people who let you down. We came to autism advocacy via the words of autistic people. We did not come via parent led organisations. You call the shots. We get it. Continually harping on what parents have done to you in the past is pointless in this respect. A non-autistic parent being interviewed about a website he created is not a threat to you or your autonomy. Please stop living in the past and try to see the opportunity of right now. Again, we do not want to lead you, we want to support you.

What do you want? An opportunity to wield the power of both autistic and non-autistic people? Or do you want to carry on putting your hands over your eyes, ears and mouths and reminiscing about ‘the bad old days’? Has it really got so bad that now you actually have the opportunity to use this power that you have to invent factions where none exist in order to escape the responsibility of using it? Now that you are very close to getting what you say you’ve always wanted from parents are you worried about accepting the mantle?

Parents are not perfect. We are much newer to this than you. Even those of us who, like me, are not NT but are not autistic either, and who have fought our own battles through the decades are not spat out of an allies-factory somewhere, ready made with all the right answers and actions. We *will* screw up. We *will* get it wrong. We need you to guide us in these times. If you want to lead, then act like leaders.

And the last thing we need is vainglorious challenges to our non-existent actions when you are unable to point out exactly what it is we’ve apparently done. This world we cohabit in is difficult enough without having phantoms to fight.

I would also urge some of you autistic people to be very careful of your own neurobigotry. One person has said that my actions are a total overreaction. Maybe. However, my own neurology makes this impossible for me to avoid sometimes. Would this person be happy with me if I said that their actions were totally antisocial? Or if I said that their inability to perceive a differing neurology indicates their lack of theory of mind? Or would I be accused of ableism? This person also said I should make every effort to separate the message from the personalities involved. I have. My neurological make up makes that very, very difficult to do but if I want to try and pass as normal I can sometimes do it. However, I was surprised to hear such encouragement to assume normalcy from someone I always considered a strong advocate for being who you are at all times.

This entry will solve nothing. Its not intended to. Its merely me letting off steam. I still have no idea about what neurodiversity is anymore or my role (if any) in that movement. I still have no idea what to do with the Hub. However people can rest assured Larry will have no role in deciding its future.

60 Responses to “Nothing is decided here”

  1. Ballastexistenz June 4, 2007 at 03:54 #

    meaning partly not meant say other than when say larry do good things not mean kev not do good things or something

  2. daedalus2u June 4, 2007 at 03:59 #

    If someone wants to “lead”, they need to show the rest of us a path to someplace that we want to go.

  3. Joel Smith June 4, 2007 at 04:06 #

    I think people are getting confused over the concept of “lead”. There doesn’t need to be an elected leader of autistic people, and that’s NOT what I’m talking about.

    They do need to look towards autistic people *AS A GROUP* to determine what our wishes are, and then follow those wishes. We’re leading, even if there is no one leader, in that situation.

    When someone says “I have just as much right as you to decide your destiny”, that’s rather arrogant and is certainly trying to lead when the right to lead isn’t there. I know that no one has said it this way, but this “everyone is equal” stuff applied unjustly implies that.

  4. Steve D June 4, 2007 at 04:45 #

    Again, Joel, that is precisely what I am suggesting – for autistic persons AS A GROUP to amplify focus amidst the Hub on issues that are important for autistic people AS A GROUP. But, instead of vague references to leadership, I am trying to offer concrete suggestions as to what form that could take – specific to the Autism Hub.
    I value this online environment – it has enriched my knowledge and understanding in many ways. It is an irreplaceable tool for the proper approach to understanding the needs of my son. In light of recent events, I feel that if some “tweaks” to the status quo are not made, the environment is in jeopardy of changing for the worse. Already, Kev – the guy on whose website we are having this conversation – the guy who created the Hub – is questioning his desire to continue associating with us. This is not a good sign. This is an undesirable conclusion. No one, in my opinion, is better off here if someone like Kev, or someone like you, Joel, wants to walk away from this thing.
    So let’s focus on some solutions. Let’s offer some suggestions. If mine are rejected, fine! Let them serve as grist for the creative mill. There is tremendous human intelligence gathered all in one spot here – let’s stop degrading our efforts with rhetoric and instead turn to some action-based, solution-based thinking.

  5. Ms. Clark June 4, 2007 at 04:59 #

    Can I suggest that we stop discussing the whole affair/thing/problem/task for a couple of days? Go prune our roses and pet the dog and hug the babies or feed the goldfsh? Go for a walk. Turn up the music and dance. Read a book, probably better if it’s not about autism. Just let the dust settle?

    Not demanding, just suggesting. Neither am I saying I had no hand in stirring up the problem and am now just the humble peacemaker.

  6. Kev June 4, 2007 at 06:03 #

    _”emotional $#!+ that has flown back and forth both from him and from those who have taken personal umbrage at how he said what he said.

    Joel has been making those very points and asking the right questions about them. So has Amanda. If you can’t objectively hear anything Larry is saying at this point, then listen to the same points as articulated by Joel and Amanda.”_

    I’m sorry Phil. I totally disagree. Larry had precisely _one_ good point. However (and i can’t believe I’m having to say this once again) _nobody ever questioned it_ . So I’m left with questions about Larry’s motives for ever raising it and for raising it in the way he did.

    You wonder why people are offended? Amazingly, there are people ‘out there’ who don’t like being sniped at in an utterly baseless manner and in an utterly disrespectful and disparaging way.

    Lets say someone accused you of being someone you weren’t. Lets say that despite your requests for them to show just one bit of evidence supporting their claim what they actually did was go around repeating the same vague, baseless accusations. How would that make you feel?

    People want to give Larry a free pass because he has other things on his plate. Or because his rhetorical point is correct. Or because he’s done good things in the past. I don’t and won’t. As the person staring down the barrel of his accusations and name calling I want both answers and the right to be as ‘philosophically destructive’ as Larry is.

    Nobody, regardless of who or what they are, has the right to accuse another person and then run away when asked to back up their accusations. That is the act of a narcissistic bully who wants the limelight for the sake of it.

  7. laurentius-rex June 4, 2007 at 06:39 #

    Kev I did not wish to start a war with you, but you went too far. I have left the hub, I hope you have made the necessary ammendments to the code so I don’t show up.

    What more do you want. When a person finds themselves so out of step with something that no amount of explanation will ever change it, what is left but to resign. I owe you nothing other than to defend my character against unwarranted assasination.

    This is not my hub, I am not on trial that I should have to answer your accusations. Neither I am one of the mercurians or curebies for whom invective is usually reserved. If my style is wrong, consider then the abusive terms that are heaped upon the opposition from here and whether that is really productive or enlightening either. I have probably been as guilty as that as any but you can’t judge peoples worth on whether they agree with you or not.

    The way I write is the way I write, always has been, its somewhat ingrained into me. You want to know about bullying. What do you think I have had to put up with?

    You are doing yourself no favours in this.

  8. mike stanton June 4, 2007 at 07:22 #

    This will be my only comment on this subject.

    I believe that Kev has misunderstood Larry’s message and his motives. I see no point in adding to the arguments about Larry’s character or his contribution to the autistic community.

    I just want to state that Larry is a friend and a colleague whom I trust who has done as much as anyone to advance the interests of autistic people.

  9. Kev June 4, 2007 at 08:01 #

    Larry, you are full of it.

    _You_ began this. _You_ made baseless, groundless accusations. _You_ gave me names. _You_ then cheerily assigned this to ‘breaking a few eggs to make an omelette’. Here’s your omelette Larry. Taste good?

    _All_ I want is one thing – something to backup your claims. You don’t need to write an essay, you don’t need to write a dissertation. No high powered quasi intellectual posing is required.

    When you accuse someone, or a group of people, of something(s) then what you need to do is quite simple: Put up or shut up. You don’t get a free pass from this because you’re Larry Arnold.
    Mike is absolutely right that I cannot understand your message Larry. _THIS IS WHAT I’VE BEEN SAYING FOR THE LAST FEW FUCKING DAYS._

    Maybe instead of running from blog to blog whining for the last few days about how nobody understands, you should try EXPLAINING YOUR POINT. And not in a rhetorical manner. I want you to put meat on the bones of your accusations and name calling towards me and other parents on the Hub. Where are the _SPECIFIC EXAMPLES_ of my, or any other non-autistic parents attempts to usurp the agenda of autism acceptance and/or neurodiversity?

    I don’t want a war with you either Larry but there is absolutely no way in hell I will sit here meekly and accept the judgement of Larry Arnold based solely on the baseless assertions of Larry Arnold.


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