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The Autism Hub

7 May

As many will know, the Autism Hub has been put on hiatus. Many will also know why but if you don’t the reason extends to cyberbullying between a minority of members and their misogynistic attitudes to others on the Hub. The Admin team of the Hub had no choice but to put the Hub on hiatus as I see it.

BUT. I hope this is a temporary hiatus. The world needs a place like the Autism Hub, a place which has transformed itself from its first incarnation when I built it of a blog aggregator of blogs that followed a neurodiversity creed into something much more than that. It became an ideal, a banner which stood in lots of peoples minds – both autistic, NT and other forms of ND – as a force for good if I might be so simplistic. In a web that was covered with material about how awful autism was, it was refreshing to read material that challenged that simplistic view. And whether the blog was written from a standpoint of pure autism advocacy or a standpoint of tackling the antivax arm of autism (and all the flavours in between), refreshing it was and for me refreshing it remained.

One highlight was seeing autistic people and their NT allies presenting material under the banner of the Hub at San Diego University. Thats when I realised how much the Hub had changed beyond my own simplistic view of what it was.

By that time of course I had given up ownership and control of the Hub so the credit for that achievement did not lie with me but with the two current admins. It was they who oversaw the transition of the Hub into a flagship of ideas and I was thrilled to see it happen.

However, more than the admins, the formation of the Hub is made up of its members and they more than anyone dictate what the Hub should be. Sadly this meant for the Hub that some members took advantage of this liberty and thought that meant that in an effort to carve out their own identity it gave them free reign to abuse other Hub members.

And so we’re in the situation we are now where the actions of a few have impacted on something that gave great benefit to many. That abuse has led to a situation where the Hub cannot be administrated effectively without the current Admins effectively becoming full time unpaid administrators. Something that it neither fair nor feasible.

I don’t have any firm and fast idea about what to change or how but I do know that for Hub members, this is – as it ever has been – YOUR hub, powered by you for no ones financial gain and for all of our intellectual and moral gain. To lose it because of the actions of a few people goes beyond a shame and verges on tragedy. Do you really want to leave something – or see this something die – because we cannot deal with rogue members? Now is the time for all of us who are members to have full, frank and open talks about the FUTURE of the Hub, not to lament its golden past. So please – fellow members – lets talk.

Autism and Murder

18 Mar

Two stories recently made a splash in the autism community. In the first:

An 18-year-old man described as “severely autistic” is in custody on suspicion he murdered a 59-year-old Coos County woman…

and in the second:

A judge has ruled that Asperger’s syndrome cannot be used by the defense in the case of a man accused or murdering a woman after he lured her to his home in Savage in October 2007.

Three blogs carried this story, each revealing their owners particular viewpoints. In his small circulation blog, Harold Doherty said:

In recent days and weeks two severely autistic young men have been implicated in homicides. In one case, a young man with autism has been implicated in the death of his mother who publicly professed her deep love for her son and the joy that he brought to her….Neurodiversity ideologues are unlikely to change. Their views are entrenched and tied to their own public careers as professional “autistics” or “enlightened” autism parents. The truth is that they discourage society from addressing the harsher realities of autism by effective therapy, treatment or cure. They help keep members of the public from understanding the full nature of autism, particularly as it affects the most severely autistic. Theirs is a movement whose aim is to keep everyone from facing autism reality. Theirs is a movement which wants society to keep our heads in the sand and ignore autism reality.

And on their advert covered anti vaccination site, Age of Autism said:

How many stories of violent deaths allegedly at the hands of autistic teen males will we have to read before the world either A) embraces treatment for autism as a medical ailment or B) paints all autistic males as dangerous killers and locks them away a la 1955?

So you can see that Harold uses these deaths to say how silly neurodiversity is and AoA use them to say that treatment for autism is the only valid option before society is overrun with autistic killers.

Both viewpoints are pretty ridiculous. Harold builds up the idea that members of neurodiversity don’t like to talk about the bad things autism can bring. This is patently untrue as just a fairly random peruse around Autism Hub blogs would reveal. In fact, what neurodiversity bloggers tend to talk about are the good things and the bad. A quick example from Niksmom for example. The thing is that for parents on the Autism Hub who talk openly about their kids, they easily mix the good and the bad. Amanda Baggs, an autistic person, talks about some of the bad things that can happen to autistic people often. What Harold finds offensive is that we talk about the good things *at all* . I have no idea why.

And of course, on AoA they are desperate to link everything together with treatment. To make sure that *every aspect* of autism is seen as medical and to encourage biomedical treatment of those issues. A simple look at the advert-riddled blog that they have become is evidence of that. NB – I’m not knocking ads on websites at all but six image and text ads and five ‘sponsors’ is a little bit too much.

But then the third blog I’m talking about is Lisa Jo Rudy’s where she asks carefully and thoughtfully about how we can make sure that autism is _accurately_ reported on and presented to the world?

How can we battle the anxiety felt around the “autism spectrum” diagnosis? How can we present the face of autism accurately, without raising the specter of violence? What are your thoughts on this thorny issue?

Note the lack of appeal to fear (cure ’em or they’ll kill us!!) or appeal to fallacy (the evil ND’s are brainwashing the world!!) that AoA and Harold feel compelled to perpetuate. In fact the only quibble I’d have with Lisa Jo’s piece is the emphasis she places solely on children. However as someone writing from the POV of a parent maybe this is understandable.

In my opinion, the answer to Lisa Jo’s question – how do we get accurate information out about autism? – can be answered in some part by science.

I found it quite difficult to get ahold of papers about autism and death attributed to an autistic person. But the few that I did get access to point to quite a different direction than the overly bleak and purposefully twisted futures foreseen by Harold Doherty and AoA.

In this study, the authors looked at rates of criminality amongst those with a Pervasive Developmental Disability (subgrouped to ‘childhood autism’, atypical autism and AS) . In the childhood autism group (which corresponds to severe/kanners/etc) 0.9% had a conviction as adults. In the control group, the rate was 18.9%. For atypical autism the conviction rate was 8.1%. The control group was 14.7%. For AS, the rate was 18.4% and the control group was 19.6%.

So, in each subgroup of PDD the authors looked at, the rate of criminal conviction was lower than controls. For the type of autism that Doherty and AoA are talking about less than 1% had a conviction compared to 18.9%. I think its clear that if this paper is accurate then we’re hardly going to be overrun with autistic killers.

In the other paper I couldnt get ahold of to read in its entirety, the authors looked at wether moral judgement was present in autism. Its worth noting the assumption that ‘theory of mind’ is somewhat accurate by these authors but still,:

Cry baby scenarios, in which the distress of the victim is “unreasonable” or “unjustified,” do not elicit moral condemnation from normally developing preschoolers or from children with autism. Judgments of moral transgressions in which the victim displays distress are therefore not likely the result of a simple automatic reaction to distress and more likely involve moral reasoning…

Therefore,

…basic moral judgment [is] substantially intact in children with autism who are severely impaired in ‘theory of mind’.

Or in other words, severely autistic people demonstrably know the difference between right and wrong.

The third paper that I did get ahold of in its entirety was a very disturbing case study about an autistic 10 year old girl who killed her baby sister. After reading it and the heap of physical and mental abuses placed upon the autistic child, including the parents letting neighbours beat her and the parents withdrawing her seizure medications I felt this case was too extreme to be valid.

The feeling I get is that these tragic cases of severely autistic people seriously harming others are rarer than rare. Certainly the observation that severely autistic people clearly are aware of right and wrong and that the follow up observation that severely autistic (and atypically autistic) people had an extremely low conviction rate compared to controls shows that I think its very wrong to paint autistic people as requiring a cure before they kill us all or are forcibly locked away. It is also wrong to suggest that the ability to find happiness in a life with autism is somehow not realistic because autistic people kill others. Its a real shame that Doherty and AoA – all parents of autistic people – have so little respect for the sort of people their children may turn out to be.

The Autism Hub stretches its wings some more

18 Sep

Mike from Action for Autism is heading down to London for the NAS International Autism Conference on behalf of the Hub tomorrow.

This continues the great work Steve started back in the winter of 2007/08 and carried through during the early part of this summer at USD.

I am utterly thrilled to see the Hub gaining such prominence amongst the scientific elite of American society and the group I feel is the most ‘ND’ friendly in the world – the UK’s National Autistic Society. It really does feel like the right people are listening to Hub members and so the right message is gaining prominence.

Mike’s presentation introduces the Hub to the NAS audience and goes through the history of how the web has traditionally been used in autism advocacy and how the Hub tries to redress the imbalance.

I have been tangentially involved in Mike’s preparations in my role as a designer but I would have loved to have been able to stand alongside Mike at the conference and showcase the Hub. One day.

The future of the Hub is very, very bright. All Hub members are involved in discussing how to take the Hub forward and what should be next. Dave and HJ are managing what is a very fluid process and I am really excited to be part of that team of dynamic and forward thinking individuals.

Go Hub!!

An Autism Hub Update

6 Jul

Last month, it became even more apparent to me that academia appreciates the Autism Hub.  I’ve always enjoyed a large proportion of visitors from .edu domains at Autism Street, and I’m sure the same goes for much more than a few hub bloggers. I mention last month, because that’s when a group of several Autism Hub bloggers were invited to present at the USD Summer Autism Conference (a second invitation). I would be remiss if I didn’t extend a “thank you” to Steve D of One Dad’s Opinion for his tireless effort in organizing our participation there. I would be even more remiss if I didn’t note that some outstanding people (like Drs. Anne Donnellan and Julie Robledo of the USD Autism Institute) in academic circles seem to have an eye on the future – they both seem to have a keen interest in adults with autism, and what’s coming from the real autism community in general. Of course, having an autistic child, it’s difficult not to appreciate those whose conference was titled, “Work With Me, Not On Me“.

At any rate, thinking a little more about an eye on the future, I proposed a minor facelift for the Autism Hub. As many of you are probably aware, the Autism Hub is no longer run by Kevin Leitch, so I sent the proposal to the current Autism Hub administrators. I was happy to learn that the proposed changes were accepted and implemented.

Have a look for yourself.

I’d like to take a moment and acknowledge the efforts of Kevin Leitch. His orignal Autism Hub designs paved the way for a true community tool that has enormous value. I also appreciate the fact that he does not oppose such changes (as communicated in an e-mail) to his original designs. The whole situation kind of reminds me of that moment when a parent lets go of something with respect to teaching their children. I would assume he’s proud that the Autism Hub stands on it’s own, but I would also assume he’ll view some things as potential mistakes (mistakes that are the Hub’s to make and learn from).

A minor visual redesign and a few potential mistakes aside, the long-term importance of The Hub is clear in my opinion. It remains one of a few unique places on the internet where one can find some of the best blogging from autistic adults (and family members and students/professionals) who focus on the important issues surrounding autistic people and the autism community.

Many thanks to Kev Leitch and everyone who contributes with their writing (or other skills) to The Autism Hub.

Autism Hub at USD and on NPR

25 Jun

Under the care of Dave Seidel and HollywoodJaded, the Autism Hub has gone from strength to strength. They are to be massively congratulated for all that the Hub has become.

However, two other people have driven the Hub into new areas this past year. These two people have demonstrated both singly and jointly exactly the ethos I hoped the Hub would have. Parents and autistic people speaking together.

One of the key areas Steve and Bev have worked in is getting the Hub to an academic audience and a public audience. Steve has worked tirelessly to arrange not one, but two Autism Hub based presentations to an academic audience. I’ve blogged it already but the University of San Diego is currently holding a conference at which Autism Hub bloggers are taking a large part.

Autism Hub at USD

Also on this issue, Steve and Bev appeared on National Public Radio station KPBS show ‘These Days’ to talk about the USD conference and the Autism Hub.

You can listen to the show in MP3 format. Bev and Steve do a fantastic job and it was great to hear the personification of the main idea behind the Hub (that of autistic person and parent to autistic people speaking together).

I wanted to offer a hearttfelt thank you to Steve and Bev for doing all that they have. It really does matter and it really is important. Thank you.

Autism Conference and Autism Science

29 May

First of all, I want to let people know that the second USD Autism Conference involving Autism Hub members Has been announced.

There is a Facebook Event to allow the Autism Hub Facebook Group to disseminate information about the conference.

This is, once again, due to the tireless work of Steve. Thanks are due to him.

Secondly, an interesting piece of new science has been announced:

A Long Island researcher has pinpointed for the first time brain regions in children with autism linked to “ritualistic repetitive behavior,” the insatiable desire to rock back and forth for hours or tirelessly march in place.

…..

In children with autism, Shafritz found deficits in specific regions of the cerebral cortex, the outer layer of gray matter linked to all higher human functions, including repetitive behavior. He also mapped deficits in the basal ganglia, a region deep below the cerebral hemispheres.

So this would seem to be yet another area of autistic behaviour that has been ‘reclaimed’ from the anti-vaccine people who claim that the repetitive behaviours were a symptom of mercury poisoning. This is, of course, all to the good as it means that accuracy has replaced supposition.

From Mike McCarron to the Autism Hub

27 Jan

What follows is the text of an open letter, Mike McCarron, grandpa of Katie McCarron wishes to pass on to Autism Hub members.

An open letter to members of the Autism Hub.

I wish to thank each of you for your words; both about Katie and about people with special needs in general. In a world where differences easily become reasons to devalue people, your words have always conveyed respect, dignity and love for those with special needs.

I know that each of you from time to time question if you should express yourself and wonder if you are making a difference. Your opinions and descriptions of your travels in life have made a big difference to one grandfather and I suspect to many other parents.

In the days following my granddaughter’s death I was very upset. As I read comments from autism “advocates”, I moved from upset into anger. Many wanted to twist what happened to fit into their own agendas. All of you know the dialogue. I began to feel that all reason and common decency had been beaten out of society and replaced with hysterical and illogical screaming. Every time I would read some “advocate” say they could understand how a person could kill a child with autism I would bristle and await their self serving monologue of martyrdom. I even viewed a film clip that turned my stomach but it was receiving wide acclaim.

Then I encountered a different film, one of a little girl bouncing on a trampoline and I met Kevin. Next I found Kristina and the rest of your sites followed at different times mostly by reference from one of these two. During the extremely long trial process of twenty months I have visited your sites, some almost daily. Sometimes I would comment under a pseudonym but most of the time I just read and drew strength from your thoughts and your love. My interest in your posts varied by topic but I was always gratified and reassured by the love you expressed for your children and the respect shown for all people with differences.

I have had the pleasure of meeting some of you in person, I have corresponded with some of you, and still others I know only through your words on the internet. But words are so vitally important. The words used by some are frightening, intended solely for shock value, but are very divisive in the long term. Every time an “advocate” classifies autism as a fate worse than death they not only display the weakness of their own mind, but they do a terrible disservice to every autistic person. Your words and posts, firmly grounded in respect and love, foster the understanding needed for social movement toward improvement.

I sincerely hope that parents new to the autism community encounter the hub and your sites long before visiting many others. I find it strange to recommend sites that value human dignity; every site should, but too many don’t. That is what makes your sites so valuable. It seems that autism falls prey to every kind of con artist, they need to be exposed. It also seems that anything can be said about people with autism if the person saying it claims it was done to create awareness, they need to be set straight. Please continue to lead by example, do it as time permits but do what you can and what you already do so very well.

Sincerely,

Mike McCarron

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.

Father knows best?

31 May

Larry made a couple of comments on my last but one post regarding the vaccine/autism link that puzzled me a bit. I thought at the time that he’d missed the point.

Larry is not quite as enamoured of science as I am – fair enough – although he sees the dangers of the anti-vaccine lot he sees a wider picture. Thats what he was trying to get at.

Trouble is, of course, that blogging is not a great medium for seeing a wider picture. Blogs of all kinds tend to hone in over time on a very particular idea. For this blog, its become the poor science sometimes associated with autism. This is inevitable as a blog ‘ages’. I write about this as I feel it is vital to expose the end result of autism related quackery. Injury, abuse and death.

Around the same time, there was a brief flurry about an article concerning Sigourney Weaver’s take on autism, which is refreshingly positive.

I was going to blog this article myself a few times but there was something bothering me about it that prevented me. I click on to what it was yesterday after thinking about Larry’s comments. Here’s an excerpt from the article:

The movement has a strong Web presence at such sites as Neurodiversity.com, Left Brain/Right Brain, Autism Diva and The Autism Acceptance Project, http://www.taaproject.com

So what’s wrong with that? Its great to get a mention, of course it is. But what bothers me about it is that, of the four sites listed, only _one_ is owned and run by an autistic person.

That isn’t right. That’s wrong. Something has gone wrong when the web presence of ‘the movement’ is painted as being mainly non-autistic.

Larry wrote a piece yesterday that elaborated on his thinking.

I am there for the same reasons as 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’ll be frank, it took me aback to think that Larry though that way about the Hub. However, he does and it needs addressing. And as much as I might want to take the easy way out and pooh-pooh it, my mind keeps coming back to that article listing the web presence of ‘the movement’ as mainly non-autistic.

This is not to say I agree 100% with Larry as I do not. I do not think that ‘the message’ should come primarily from autistic people, not parents. I believe it should come from both, equally. However, I believe that the message should be formed by autistic people and those of us who are not autistic should support that message. I also know that Larry’s assessment of the situation in the UK regarding mercury is sadly wrong. It is getting worse, not better and it needs to be actively challenged and fought.

However, I _do_ agree that the science/medical issues are very much secondary to the fight as Larry defines it. I _do_ agree that no parent who claims to be an ally of autistic people should be using the line “but you can speak for yourself my child cannot” and I would be horrified to think that any parent on the Hub _has_ used that line or any equivalent of that line. I _do_ agree with the adage (to paraphrase) “nothing about them without them”.

So what do we do? I cannot ignore this, but at the same time I will not stop blogging about what _I_ care about.

What needs to change? I think the Hub needs some addressing. I have a loose system in place wherein any entry I’m unsure about I refer to two other people, at least one of whom must be autistic for their decisions. If it requires a casting vote then I do that.

Maybe the Hub requires more direct control from its autistic members? How would that happen?

Any other ideas? What else can happen to address concerns like Larry’s?

Time for changes

23 Apr

For those that missed it, my site got zapped over the weekend. I went over my bandwidth allowance. I usually shift about 14-15GB per month but this weekend I went over my 15gb limit – a whole 7 days early. Yikes.

The culprit was the Chelation video which shifted 5gb on its own and was pushed over the edge by getting linked from Orac. Not his fault at all, I should’ve been keeping a closer eye. Normally, the 5gb that the video took would’ve seen me through to the end of this month but this time I was flatlined.

My host is a good guy and offered me a gig for free to get me through to the end of the month but a gig only lasts me 2 days so I bought another 5gb per month, taking my monthly bandwidth allowance up to 20gb. This will give me a little breathing room.

However, I have to restructure some stuff that’s on here. One of those things is Meg’s blog. I’ve already moved it but in order to preserve its privacy I need you to do a few things if you want to keep on (or start!) reading it.

First head to the WordPress.com signup page and create an account. Just select the ‘Just a username, please.’ option and that’s all you need.

Second, when your account is created, mail me your account name and the email address you specified when you signed up so I can add you as a user of Meg’s blog. Only registered users can see her blog and only I can add registered users.

That’s it, that’s all you need to do.

Other changes:

I may be redesigning this site to reduce the imagery. The less large files, the more I can keep my bandwidth drain lower.

The Hub will be redesigned. I want to make it work harder for users and I need to organise how it lists members better. I think there are now too many members to just have one big list. It needs a bit of categorisation.