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.