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?
Left Brain Right Brain 
Kev –
I think Larry’s comment about autistic parents speaking for their kids may come from a brief exchange we had on my blog, under my post “The Forum”: (http://onedadsopinion.blogspot.com/2007/05/forum.html)
I responded to his stated concerns as follows:
“As the parent of an autistic child who is not at an age for self-advocacy, I feel responsibility to help pave the way for a good future for him. In this case, it means adding my one voice to the many others who are trying to communicate the concept that autism is not what it has often been believed to be in the past. I am surprised you would take issue with this, but would like to hear more and welcome the perspective.”
I could be wrong about this, and I may also have made other statements that Larry has honed in on as being inappropriate. I am prepared to apologize and adjust my tone if it is called for, but I certainly have never intended to cause any strife or be insensitive. I, for one, appreciate Larry bringing this issue up and am feeling, like you, the need to carefully consider it and make any appropriate adjustments.
It would be a bit ironic if a bunch of parents of autistic children were the ones addressing the over-representation of parents. Larry is right, but there is nothing I can do about it. His message is not addressed to the parents.
Well, I’ve just read that post and the comments and again, I can agree with some but not all of Larry’s points.
Maybe a little bit of history that Larry isn’t aware of may be in order.
I had a long email chat with an autistic individual (who may well name themselves if they read this and feel like it) about 18 months ago about the notion of getting parents more directly involved in the advocacy process. This person and I agreed that a good way to get more parents ‘onboard’ neurodiversity was if they saw from their peers – other parents – that it was a positive and responsible concept. We expanded that email chat to a group of other autistic (and non autistic) people (who again may well name themselves if they read this and fill like it) who agreed with our idea of trying to bring parents away from cure-at-all-cost and towards acceptance.
It was never discussed that parents should in any way rework any ‘agenda’ (or even that there should be an agenda for parents other than as allies).
I don’t want to _set_ the agenda, because as Larry says, it isn’t my place to do so. What I _do_ want to do – and what I will do – is discuss the agenda and encourage as many parents as possible to do the same.
I take exception to Larry’s point on your blog that _”it seems to me that neurodiversity has been hijacked.”_
There are parents who are also autistic people. Further, as far as I am aware, neurodiversity is not limited or exclusive to one different set of wiring – autism – but encompasses many different sets of neurological difference. Bipolarity, ADHD, many more. There are parents that I know have these neurological differences and thus they have a right to participate without being labelled as hijackers.
I also don’t believe Steve was promoting anyone to ‘hero’ status. I would not agree with Steve that I lead anything. I just happen to have experience in a technical area that can help.
I think Larry makes some excellent points and I think we need to discuss them. I particularly want to know what autistic people who read this blog (or the Hub) think.
Interesting. I just went and counted the amount of parent vs autistic run blogs on the Hub and it seems there are 23 to 29 in favour of parents. Again, that’s supportive of Larry’s point and needs addressing.
I don’t feel a need for everyone in the “movement” to share my neurological make-up. The things I find essential are respect for autistics as equal human beings and an understanding that this doesn’t exclude us from sometimes needing help (services, whatever) in a world which is not designed with our needs and abilities in mind.
I am in agreement with Phil Schwartz (and others) on this point: we need the voices of our allies and would be wise to form partnerships with those who support our views.
On the other hand, yes, as autistic adults, we need to take the lead in declaring those issues which need to be addressed. I, for one, am grateful to have you and other Hub parents on our side. There are just not enough autistics doing this work right now to make the kind of difference we are striving for.
Sure, your goals may differ slightly from mine, but so do Larry’s. We are all individuals and as people who value our differences we will never speak with One Voice. Thanks for all you do, Kev.
I would be offended deeply if my voice was shut out of “neurodiversity” simply due to a lack of diagnosis. I certainly do not think and experience and cope with the world the same way most people around me seem to. Just because I am not autistic either, and my child is, my voice should not be permitted? That doesn’t make any sense.
_”I would be offended deeply if my voice was shut out of “neurodiversity†simply due to a lack of diagnosis.”_
I don’t think Larry is suggesting that :o)
I think his main point (and he’ll put me right if I’m wrong) is that it should be autistic people setting the agenda of autism acceptance. I totally agree with him.
Kev wrote:
There are parents that I know have these neurological differences and thus they have a right to participate without being labelled as hijackers.
We all have a right to participate. I see neurodiversity as a broad concept that applies to the human species in general; it shouldn’t be limited to those who have been diagnosed with a “mental disorder.” If the whole point of neurodiversity is the acceptance of cognitive differences as natural and healthy, which necessarily conflicts with the psychologists’ negative and often biased and unscientific labels, then why on earth would we want to restrict ourselves and our advocacy efforts based on those same labels?
When we allow the psychologists to determine who can be part of our movement and who can’t, we’re surrendering our power to define ourselves.
I think we (autistics of all stripes…Kanner, asperger, rett, CDD, Pdd-NOS) need to take a lead.
BUT.
I sure am not going to shoot down someone who wants to help because of their neurological configuration. Mike McCarron struck me as wholly NT and wholly a candidate for advocacy, as an example of someone without a blog. I believe in true neurodiversity, not any form of neurosupremacy. And if I am being honest, face to face people are going to take just about anyone more seriously than they take me. Being taken seriously is more important right now than which persons present the message the most.
that, and limiting it to autistic people is NOT what I conceive diversity to be ABOUT.
So there are a few more parents on the Hub than autistics. So what? It’s certainly no where near the point where one could say they’ve “taken over”, and they have important things to say. Parents may not have the insight into autism that their kids have, but they have a different kind of insight- insight into how their kids act from an outside perspective, insight into who they are, insight into parenthood itself, into how they can teach their kids, any number of things that are valueable.
Besides which, the Neurodiversity movement is not restricted to the Hub alone. There are blogs that operate outside the Hub, there are sites like Aspies For Freedom (which, by the way, is populated almost exclusively by autistic individuals, not parents), and other places. To say that the entire movement is being taken over by parents, based entirely on some characteristics of the Hub, is absurd.
I’m so glad to be reading this dialogue. With only 10 comments (so far) several excellent points have been made. Thanks Kev for remaining sensitive to all opinions and POV’s on this issue.
I’ve learned a hell of a lot by thinking through Larry’s discussions and comments as well as those of other autistics over the last couple of years.
I hope when he gets older, my son will view Larry and other autistic advocates, as well as NT-autism advocates I’ve come to admire, as role models.
I would like to point out BTW that I have in a sense been here before.
I first became not in the neurodiversity movement, the word was not even coined then, but the disability movement, through my mum.
Back then in the 1980’s too many organisations were principally carer’s and parents organisations, and that was the way it was when I first became involved.
There was a struggle going on to gain control of those organisations, and there were on the one side groups like Scope (then the Spastics Society) and ASBAH (spina bifida) that were parent created and run, and others like the Spinal Injuries association and various coelitions and councils of disabled people that were disabled led.
I had to be careful too because I was principally a carer for my mum not to speak up for the carers perspective, but the person who was being “cared for” that is to say mum came first, I came second.
However mum informed me that I was a disabled person in my own right, and in that sense I was accepted within the movement, speaking not for my mum, or myself but for the pan disability perspective.
If you look today at the disability movement in the UK you will see some of the arguments continuing, over control of organisations like Scope, but a lot has changed and now it is pretty much accepted that parents have moved out of the picture and disabled people are the ones who need to be consulted about legislation and services. It is mostly organisations like the NAS who are left behind, which in a way is where I was coming from when I first joined, as I wanted to change that.
Oh and for those who feel shut out because of a lack of a diagnosis let me just remind you about autistics who are shut out because of one. I cite Michelle Dawsons writings about the Autism Society of Canada for only one example.
You don’t like it if you are being shut out do you?
Well consider how it was once for blind people who were not judged to have the competence to run organisations such as the Royal National Institute for the Blind. Deaf people who were historically shut out of positions of responsibility in Gallaudet University.
The list goes on and on. Just consider where I am coming from. If the liberation of these various groups of people had been allowed to proceed along the lines of those who, with the best will in the world spoke on behalf of those they judged needed there able bodied and sensorily unimpaired input, we would be stuck with the charitable model of institutional welfare and not what the people themselves wanted in terms of autonomy over service provision and rights to employment etc etc.
Well, talk about prescience (rubs knuckles on shirt:). I declined an invitation to join the Hub mainly because i didn’t want to see the autistic voice diluted anymore than it was. That said, the other reason is that I am not much of a joiner and the reason for that is that I value diversity, true diversity in that every person in the equation gets to have a say. Obviously that includes parents.
As a recent blog of mine said fairly comprehensively, agenda setting from a neurological perspective has quite a few limitations. It’s just not that straightforward. Also if some person wants to set an agenda, I’d like to know first up whether they have the capability to do that and their diagnosis would be only one factor.
I still think the Hub should be careful of the numbers, but that’s just my take on it.
I take on board exactly what you are saying Larry, I assure you, but with all due respect, this is a different time, we all communicate in a different environment.
I respect your vigilance very much and your perspective as someone who is well versed in disability rights but I genuinely and sincerely do not know of any non-autistic person who wants to control the agenda. We want to be strong, vocal allies.
If it would reassure you, I will transfer total control of the domain name autism-hub.co.uk to you right now, today as well as total control of the control panel to operate it. If you don’t want it, nominate someone and I will pass it to them. However, I repeat – I _do not_ want to control any agenda and I am bewildered as to where you might’ve thought I do.
I am not accusing anyone of setting an agenda, what I am trying to point out is my observation that sometimes it seems like the autistic posters are being overlooked somewhat.
I never known for going along with a majority opinion or trend just for the sake of it, and I find myself equally critical at times of some factions within autism such as GRASP for instance (for the accord with Autism Speaks) or any of the tendency who are apt to say that AS is ok, don’t cure me, but then say that LFA is something different which ought to be cured, as that simply plays into the hands of people like Lenny Schafer.
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.
For what it is worth the parents who started organisations like Scope were no less sincere in there day than the parents here, it just happens that historically they did that at a time when there children were young, and they never really envisaged the way things would develop when there children grew up.
There is truly nothing new I read in the parents perspective to what I have seen in more than one generation of parents in those other organisations.
It is ironic that after my mum died, I applied for a position with MENCAP who were at that time undergoing major changes in policy in order to reflect the fact that they needed to include “people with learning difficulties” (this is the UK preferred term never mind cross cultural variance as to what it means)
I applied for a position which would have involved explaining these changes to parents groups in the organisation, and when I thought about it I chickened out and thought I could not face doing that.
Ironically that is what I have since found myself doing within the NAS, and perhaps what I am doing here.
It ain’t easy to say these things but I really have to, because there are things that need saying even though they are difficult to take as they are to say, but they need saying, they need to be considered, just as when I submit a piece of work on my University course, I need to take regard of the criticism that comes back when it is marked.
I have a big problem with Larry’s complaint.
When Larry was the carer (let’s say the “parent” in that model) it was obvious that he wasn’t in a wheelchair.
It’s not obvious which parents are actually autistic who are now not diagnosed or prefer to present themselves as NT because of many reasons.
I support the choice of the one or two (not naming anyone) hub bloggers who are passing for NT and identifity as NT but who are actually probably just as ND as I am, which is considerably ND.
No, we can’t make people make a choice to “out themselves” or even pressure nominally NT parents to admit to having “traits” in order to get “street cred” with some autistics.
If they shifted the criteria tomorrow, they might boot me off the autism spectrum… then what? I’m just an NT mom?
I don’t agree with much of what Larry is saying.
I don’t have any sense of anyone hijacking anything. Not at all.
Within the NAS, maybe, I don’t know what’s happening there. The situation in Autism Speaks is despicable, ASA is slightly less despicable, but still BAD.
There does not need to be more “ND” bloggers than “NT” parent bloggers on the hub, though, from my own viewpoint some of the NT parent bloggers are too neutral and not strong enough in advocating for autistic adults… I’d like to see them leave the hub… but that’s my own view and possibly wrong. The flip side of keeping the ones I don’t like on the hub is that it stretches my viewpoint and makes us all more open to other ideas, short of having those who blatently hate autism and want it “cured” and “prevented” at all costs. (I don’t control who is on the hub, so don’t worry if you think I can boot someone off).
Some of my favorite blogs are written by putatively NT parents and I’d be horrified if they left the advocacy just up to me and other openly autistic people. The loss would be great, and that’s not a slam to the autistic advocates. Please, Kev, don’t give Larry the keys. I say that even though I’ve been a fan of Larry’s advocacy and art for a long time, still am. I am more than happy to have you driving the hub.
I also forgot to say, it is not so much the numerical balance of bloggers so much as what is said on the blogs, and if there appears to be two sections of this blogging community who go there own different directions to some extent oblivious of the others, if the readership of these blogs is staying within one section and not hearing about the other, then that is what needs to be looked into.
The point is well made by Kev about the way it was picked up in the Sigourney Weaver article which would convey the impression that the neurodiverse world is one where “our” own voice is so weak it can only exist when strongly backed by NT assistance.
I think if we forget autism for a moment, forget disability even and look for instance at the recent controversies regarding the role of William Wilberforce in the opposition to slavery, there is another parralel
Black People continued to be patronised from an ideologically hegemonic liberal white perspective so long as they were still conceptualised as a group which needed the ‘superior and all powerful’ white race to liberate them.
The message was still one of benign paternalism, of protectionism.
On the subject of African American (Black) people. What about the “Man called White” http://www.amazon.com/Man-Called-White-Autobiography-Walter/dp/0820316989
Walter White.
Was he too white to be really black? Was he black? How is he seen by “really black” African American’s? Is he an interloper pretending to understand the issues like the “really black” people two or more shades darker than he was?
He used his apparent status as a “White man” to help the people he identified as “his people.” Of course, there should never have been a “his people” and the “not his people” at all. It’s divisive.
I’m waiting for the bipolar/Tourette’s/Deaf/ADHD/dyslexics to come along and claim “neurodiversity” as theirs, and they could do so rightly, couldn’t they? I don’t mean Kathleen’s domain name, I mean the concept. Maybe they are sick of us talking like “neurodiversity” belongs to autism… maybe they’d boot Larry and me out the back door and let us scramble for another word…uhm… cortical-cerebellar-diversity? That one rolls of the tongue pleasingly…
I am going to assume that this discussion began something like this: Larry was perusing the hub looking at new posts. He came across mine. In it, he reads an NT parent giving accolades to two other NT parents about the creation of an online forum for parents of autistic children. He may have recalled that my blog was added to the hub the same day as two others – one an NT and one autistic. As I look at this moment in time from Larry’s perspective, I see exactly what he is talking about, and exactly why this caused concern.
Larry’s inital comment was how NT-centric my post was … and he’s right, it is.
Thankfully, Larry’s opinion (via his ensuing post, then Kev’s) is now out there for discussion, because I wanted to pursue it but don’t have the credibility on the issue that Larry has, or the audience that Kev has.
For my own part, I plan to add links to my site to blogs by autistic people, under its own named section. In this way, I can at least direct people who are reading my blog to also consider autism “from the source”.
I may have a slightly different perspective and I sincerely hope not to offend anyone posting here. I have found this site and many of the others on the hub to be refreshing and informative. I believe that more people of all backgrounds and composition should be posting on the hub sites. All to frequently some very loud quacks get away with outlandish, misleading and self serving claims; but not here. The people who post here take these folks to task. I wish there were more people speaking up with the concern and respect found here.
I don’t care who or what the writer may be, I care about what they say.
Today’s world is not a very friendly place for autism. It is going to take a huge and diverse community of people to improve that. There is enough work for all.
If I could control the web search engines I would fix it so that this would be the first site to come up when someone did a search on the word autism. At least those new to the community could start their learning with facts and some love.
I think all we need to do is ask Bill Gates and all the other ASD web kings to fix it and we get autism hub at the top of all searches containing the word autism, autistic, asperger’s PDD,nos…
As it is though hub blogs and hub-blogger-owned pages come up really high on lots of more specific searches, so until we get Bill Gates on board, we’re not doing so bad. 🙂
Google: autism chelation
autism geier
autism hbot
autistic adults
autistic adult
A great deal (but not all) of the credit for this goes to the chief evil ND, Kevin Leitch. 🙂
Wow, as an NT mom of a 3 1/2 yr old with multiple disabilites including ASD, I find the notion of the ND “movement” belonging strictly to ND people offensive. I peruse numerous blogs (some on the hub and some not) to glean not only insight and information about how to help my child who is not yet of an age, be it developmental or chronological, to advocate for himself, but also for HOPE in the times I feel hopeless. Sometimes that hope comes from people such as yourself, others it comes from parents like many of those who participate in the hub. If my voice is silenced, who will speak for my child? Not some person halfway around the globe who doesn’t know him. Then you are just as bad as Autism Speaks.
Why draw a line in the sand and ask parents to step away when there is strength and diversity in our numbers, our perspectives, and our experiences. The ND movement touches the lives and families of NT people,too. Exclusion isn’t the way.
Larry, I am not sure I completely understand what you meant by your comment “There is truly nothing new I read in the parents perspective to what I have seen in more than one generation of parents in those other organisations.” If I understood you to say that we bring nothing new to the party, so to speak, then please don’t bother to read our words. However, I would ask you to consider that, just as each autist is wholly unique and has value to add to the discussion/issue, so too does each parent. We aren’t all screaming about cures and vaccines you know. Some of us are actually out in our communities trying to make sure our ND kids get every opportunity possible to learn and develop to be able to SELF-ADVOCATE one day. Just like you. If I am mistaken in your meaning, then please accept my sincere apology. If I am correct, well…enough said.
The Autism Hub is not a movement. People who have blogs linked to by the hub, may think of themselves as part of a movement of autistic advocacy. The Hub is just a collection of blogs, some by parents, some by autistic people, some by people fitting both categories. I don’t like some of the blogs much, and read them infrequently, but that’s just my personal opinion. Just because they are all on the same blog ring as mine, doesn’t mean I have to agree with every word.
Regarding the Autism Parent’s Forum, it is a useful place for parents to get advice and to link up with other parents espousing a positive, accepting attitude towards autism. Again, many of the posters are autistic, and the bulk of the discussion so far deals with questions about education, benefits, toilet training etc. There are also discussions related to wider autistic advocacy. After all, the children will spend most of the lives as autistic adults.
It is important that we keep sight of the ‘nothing about us without us’ principle. Big national organisations like the NAS, should change to reflect this and I am very grateful to Larry for stepping up and taking the NAS on.
Previous generations of parents may have had the same perspective of representing their children. But that is a parents role. I have to represent and advocate for all my children, while doing my bit to change the world they will inhabit as adults.
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.
With regard to parents claiming to speak for neurodiversity that is as bizarre as English people advocating for the French and doing it in English as well.
There is nothing unnatural in parents advocating for there children at an individual level, and that is regardless of whether the child has a disability or not, that is just something that parents should do. What I object to is parents making so much of a voice that it drowns out the authentic voices of a particular cause, because the audience out there, the public is more set up to listen to the parents viewpoint, having been set up for it by all the pity party portrayals of autism coming from CAN, Autism speaks and the rest of the bogeys who have far too much “air space” as it is.
I object mostly on this hub where I read parents blogs which seem to be mostly a conversation going on between parent bloggers, almost a “mutual back patting society” if I dare say that without offending even more, without properly acknowledging the autistic bloggers viewpoints.
“With regard to parents claiming to speak for neurodiversity that is as bizarre as English people advocating for the French and doing it in English as well.”
The above comment effectively removes diversity from the concept of neurodiversity.
I am not sure that is a good place to be.
I agree with Another Voice Larry. Diversity where only one ‘type’ of person speaks is not diversity. Its the exact opposite.
_”What I object to is parents making so much of a voice that it drowns out the authentic voices of a particular cause”_
Could you provide a specific example of where this is happening Larry? I’d also like to state once again that there are parents who are also autistic and parents who are neurologically different, but not autistic. I’m afraid in this respect, I think your stance is too simplistic Larry.
_”I object mostly on this hub where I read parents blogs which seem to be mostly a conversation going on between parent bloggers, almost a “mutual back patting society†if I dare say that without offending even more, without properly acknowledging the autistic bloggers viewpoints.”_
Again, I’m at a loss to know exactly what you’re talking about…? The comment sections of blogs are populated by autistic and non-autistic commenters. I’m not offended Larry, truly :o) I just need to see a specific example to get your point.
In your opinion Larry, what _exactly_ should we, as parents, be doing with our blogs? I really don’t want to put you on the spot but this is important to get right. Give me a ten step plan :o)
It seems many of you are proving my point now, in insisting on your right to be the colonisers of Neurodiversity.
Right now I will rest my case as I have other things to be doing than engaging in pantomime arguments in the blogosphere.
I have academic work I am behind on which I must complete if I have any chance of going on to do research.
I am afraid it will take a few years for the result of that to reach the public, but in it I will be making my case with full academic rigour as to the way in which autism media at least portrays a predominantly non autistic viewpoint.
I hope by the time that I have completed that (if I am ever allowed to start it, that is) that this particular argument and sticking point will be history and that a hundred flowers of authentic autistic viewpoint blossom.
Time I hope is on my side, so I rest my case for now confident in that what I have said was what needed to be said.
_”It seems many of you are proving my point now, in insisting on your right to be the colonisers of Neurodiversity.”_
But _who_ is doing this Larry? Where? I’m asking you to give me specific examples that’s all. All you’re doing right now is repeating the same generalised point over and over again.
‘Coloniser’ is defined as _”someone who helps to found a colony”_ – that seems like a great idea to me. Everyone needs help Larry.
Is the issue that you really do see ‘neurodiversity’ as something that is solely the province of autistic people?
I see neurodiversity as the province of neurodiverse people, some of whom are categorised as autistic and are as a consequence considered of lesser worth by those who have no such hindrance.
The evidence is there, I do not have to do an elaborate piece of content analysis subjected to statistically test to prove it, because reaction time is too small to allow me, however what I am applying is my cumulative observation of the autism hub from before I joined it, the autism hub being but one sub category of all the writings about autism on the web, on usenet and in lists.
I am not some young turk who is kicking at your sandcastle, I have been around a long time and I am just passing on what I have learnt from the wider disability movement as a whole that has moved on somewhat from the position that autism advocacy is at right now.
I don’t see thinking arguments against me so much as “feeling ones”
We are all hog tied by our pysches to some extent, which is where I see the resistance and defensiveness coming from.
Larry, I’m not being defensive, I’m simply trying to understand your point of view :o). You say a lot that I agree with but you also say a lot that I don’t and I want to make sure I am understanding what you are saying.
_”I see neurodiversity as the province of neurodiverse people, some of whom are categorised as autistic and are as a consequence considered of lesser worth by those who have no such hindrance.”_
Its impossible to disagree with that but I have two questions regarding it.
1) If you see neurodiversity as the province of neurodiverse people then please can you tell me what ‘type’ of person, besides, autistic might be considered ‘neurodiverse’? Would you consider someone with OCD to be neurodiverse for example? Or someone who is partially sighted (the optic nerve)? Or someone who is bipolar?
2) Of the parents you come into contact with on the Hub (and I specify the Hub as you mentioned it specifically in your post) do you think that there are some who consider autistic people to be of less worth than them?
Dialogue such as this is very important, at all times. The moment we think we know everything there is to know about an issue we become ignorant.
That said, I’m having difficulty grasping the crux of Larry’s argument. It seems to me the focus of his admonishment should be on the media, rather than parents.
I am someone with OCD of course it is neurodiverse. as I have said before, before I got the additional external label of OCD even
“Thus one may be diagnosed with obsessive compulsive disorder, one with semantic pragmatic disorder, some with central auditory processing disorder, another with dyspraxia and another perhaps with dyslexia according to whatever present strongest, whereas to me they are all mathematical shapes within the multi-axial model, islands in the neurodiverse landscape as it were.”
http://www.larry-arnold.info/rights/neurodiversity.htm
There is no definitive list of what is or is not. This much I will tell you neurodiversity does not belong exclusively to autistics it is an evolving culture.
see also http://www.larry-arnold.info/Neurodiversity/Mission/rainbow.htm
As for what people consider people to be, the evidence is in the actions not the protestations of innocence.
Words here, are the best I can use to try and convey what I am saying, but between my words and your reception, is the shaping of my words to suit other ends, and it is of course inevitable, but I don’t think that everyone is reading with an open mind.
I have said enough, I don’t want to obsessively pursue the last word to the ends of cyberspace, OCD or not, cos it does me no good and causes me to neglect what is more important in my off line life.
This is not my hub, never has been. It is probably I who don’t belong in it.
I have got to end this now, since you can’t take to arms against a sea of troubles, because it is mixed metaphor
I have a really hard time understanding Larry’s writing. He writes well, has a great vocabularly, but my brain can’t always wrap itself around that writing – probably my fault, not Larry’s. So I hope I’m even understanding this argument.
I’m not a huge fan of the neurodiversity movement, and can’t say I participate in it. The reason for that is that it is not a neurodiversity movement yet, not that I’ve seen. Autistic people are WAY too over-represented. Until that changes, I’m not going to say I partcipate in the neurodiversity movement (although I support the idea of the neurodiversity movement). I do participate in the disability movement, but my knowledge comes from the autistic movement. There’s nothing wrong with an autistic movement, anymore than the neurodiversity movement should be a “human movement”. It’s okay to fight for rights for a subset of people, so long as your fight isn’t causing others to loose rights.
So I’m going to focus my comments as someone in the autistic movement.
First, NO, NT parents do NOT have the right to be part of the autistic movement, at least not as leaders. Should a woman’s movement allow fathers of girls to have leadership positions? No, there’s plenty of women (including mothers) who could lead the group just fine.
Yes, NT parents *should* participate, using a phrase from my work, “at the pleasure of autistic people.” I think Kevin and many other NT hub bloggers do meet that requirement. I see it the same way as those fathers I mentioned earlier – might they have a place in the woman’s movement? Sure, as support. Not as leaders. They should also represent their children when needed, not to lead the woman’s movement, but in issues involving their child. That is part of the definition of a parent. But, yes, there’s a huge difference between that and between leading the autism movement.
I do get concerned about the 100% mercury coverage the autism movement has sometimes, as I do think that the mercury battle has already been won, but I worry about what we won – and I feel very alone with that worry. I see people getting such glee out of dismissing a flawed scientific theory, but when I ask in the autistic community something like “Hey, what should I tell my State government that we want?” I get back nothing but silence, yet if I asked about why Grier was wrong, I’d get back hundreds of responses. That’s frightening to me, not because I think Grier shouldn’t be an issue, but rather because it’s actually less of an issue than, say, medical care and autistic people. Unfortunately autistic people are no better than parents or anyone else with this. I say that until autistic people can say what we want for adult services and other things, we’ll never see them.
I also have complaints against actual autistic people – Larry knows what I’m talking about when I mention an autistic-run organization *choosing* to do nothing about a potential barrier because changing the name of a room would be “too American”. I see stuff like this, and think that we have a lot of work to do in our own house still. The movement has flaws, both in things like the Hub (too much mercury, too few autistics, etc) and elsewhere (like the organization I mentioned).
What do *I* suggest be done?
Well, if anyone plans on forming any organizations anytime soon, and chooses to represent autistic people, autistic people – and autistic people alone – should lead the organization at the highest level. If they want NT staff under them, fine, but not as the highest level of leadership.
Parents and such – keep advocating for your kids. You have to. But listen seriously to us when we have some thoughts. But at the end of the day, you are the parent, even if that means you’ll have the ability to do things I don’t like. That doesn’t mean I’ll agree or support everything done in the name of parenting, nor should it. It means that you have a job to do.
Now for the Hub…I don’t see the mercury talk going away. I may think we focus too much on it, but others clearly don’t, and there’s room for a variety of opinions on this. I’ll make my case why I think other things are important, and try to get the attention of people on it. But in the meantime, I don’t see the anti-mercury stuff being against autism advocacy, nor do I support kicking people out because they aren’t focusing exclusively on whatever my (or anyone else’s) pet advocacy area is.
Let the parents remain, unless they are saying things contrary to autistic rights. At the same time, I don’t know that I’d let every autistic person in either – not on the basis of whether or not they agree with parents, but rather on the basis of “Do they have good writing?” “Is there more to the writing than blind rage?” In other words, who would get published in a “radical” newsletter?
I know this will probably cause some autistic people to be even more upbset at me. I wish that didn’t have to be the case, but it is the state of autistic community right now, unfortunately.
_”This much I will tell you neurodiversity does not belong exclusively to autistics it is an evolving culture.”_
Thank you. That’s the clarification I was after and I’m massively relieved to hear it said :o)
Now, having agreed on that I am concerned by these people that you call ‘the parents’. On what do you base your assumption that the people you are unhappy with are not ND?
Camille is a parent. Jypsy is a parent. Phil S is a parent. On the Hub I can think of 3 or 4 members of that group that you call ‘the parents’ that are autistic.
I can think of several (at least eight) more who, whilst not autistic are – by your definition – ND and also belong to the group you call ‘the parents’. They (I guess) don’t feel as comfortable talking about things as you.
_”As for what people consider people to be, the evidence is in the actions not the protestations of innocence.”_
I’m not sure I understand that Larry. I _am_ asking you for evidence of actions that have caused you to believe that:
a) ‘the parents’ are ‘hijacking’ neurodiversity are not themselves ND.
b) are actually ‘hijacking’ neurodiversity at all.
My issue is this. If you had made a series of rhetorical points about how we should all be vigilant about keeping the reigns firmly in the hands of neurodiverse people regarding neurodiversity then I personally wouldn’t be so confused about this whole thing. But you didn’t. You made concrete accusations. And yet, no matter how many times I have asked you to provide _specific examples_ you aren’t doing so. I am simply confused by this. Not defensive, confused.
_”Words here, are the best I can use to try and convey what I am saying, but between my words and your reception, is the shaping of my words to suit other ends”_
Now that, I’m sorry to say, just disappoints me. Why is there a need to invoke dishonesty? I am not being dishonest with you Larry I simply don’t understand some of your points. I think you are being far too over-generalising about ‘the parents’ and far too evasive. I don’t want to be rude Larry as I like and respect you very much but its simply not on to accuse people of behaving in a certain way and then to clam up when asked to provide evidence of that. All I want is an example of the things that are really bothering you. I don’t need any reminders about the _potential_ for these things to happen. You are saying they _have_ happened and you named the Hub in particular. As I own that site and care very much about what it says and how it says it I want to see these things that have bothered you.
Joel says:
_”First, NO, NT parents do NOT have the right to be part of the autistic movement, at least not as leaders…..Yes, NT parents should participate, using a phrase from my work, ‘at the pleasure of autistic people.'”_
I absolutely, 100% agree. My (growing) concern is that Larry is saying that this is not what’s happening. He’s further saying this isn’t happening on the Hub. If he’s right then we have to do some serious thinking as it would mean the Hub is failing in its primary mission.
Yes Joel.
I am now doing a walt whitman and contradicting myself, by not staying silent when I said I had said enough, but then maybe that is my neurological substrate dictating what I can and can’t do, never mind what I say I will.
The anti mercury argument on the hub has actually done us a disservice, because as most of us know, the pro mercury argument is arrant nonsence, but what has happened is that neurodiversity has been misrepresented to the opposition as a result of this unbalanced represenation of what neurodiversity is about and we have been falsely characterised and further vilified as a result by another group of cybercitizens, who then go on to further misrepresent neurodiversity to the casual reader who stumbles on there world knowing nothing of neurodiversity.
It is possible to be within the neurodiversity movement and believe that mercury causes autism as it is possible to hold different political opinions within the neurodiversity movement. That is not what defines it.
To me neurodiversity is about finding no medical identities for ourselves in order to combat the pervasive system of categorisation and labeling that dictates service provision according to lable and not need.
This is again the inheritance of the disability movement who have fought the division of disabled people(or what is really meant, by that to be people disenfranchised by a medical definition of disability) into divisions by diagnosis leading to arguments as to whether to be blind is to be more deserving than to be a wheelchair user, which is superior to being autistic, which is better than being retarded etc etc etc……
Beyond neurodiversity and autism, parents have the commonality of being parents, which goes way beyond disability. I see parents writing about being parents, that is what I see.
When those parents are listened to more than the autistics who are writing about being autistic (or being an autistic parent even) in the wider readership of these blogs and the way in which the hub is being represented in the news, then I see an unbalance.
I am not saying kick anyone off the hub, I am just asking parents to think about what they write and the impact of that for a less powerfull lobby.
Don’t make your voice so loud that ours is not heard, remember you are not speaking up for your children when you do that, you are ultimately making it harder for them to be heard when you are no longer around.
I hope I have put that right, it’s advice as much as it is admonition. The same advice I have put across at the NAS and elsewhere.
_”but what has happened is that neurodiversity has been misrepresented to the opposition as a result of this unbalanced represenation of what neurodiversity is about”_
I can’t believe I’m reading this. Misrepresented _to_ the opposition? Not misrepresented _by_ the opposition?
_”It is possible to be within the neurodiversity movement and believe that mercury causes autism as it is possible to hold different political opinions within the neurodiversity movement. That is not what defines it.”_
A fact I have repeated many times on this blog.
I think I need to re-consider neurodiversity as a concept, and my continuing participation in it at all, if it includes not having free will to blog about whatever takes your fancy. There’s at least one blogger on the Hub that discusses autism very, very little at all. She’s autistic. Will you be admonishing her for misrepresenting neurodiversity _to_ the opposition?
I don’t agree with Larry, although I respect him and think he’s a fantastic thinker and writer.
You see, I have trouble splitting people up AT ALL. The Autism Acceptance Project is run by me AND our autistic board members, whose suggestions we put into action. Some of us are better organizers and others are better with ideas (I’m not suggesting that NT’s are better organizers, btw — it is just a general statement). The two need to work together to make things happen. I also think that if parents and autistic adults don’t work together, we run the danger of alienating others. If you want to foster empathy, you need to BE with others. This is a bridge to real change. Blacks need to hold hands with whites and whites with blacks. We need to sit with and BE with autistic adults.
People are just people. We need to be and work together. This is after all, one of our goals, right?
It’s not as simple as a woman’s rights movement, or a black rights movement. I am not black. I cannot advocate as effectively as someone who is pummeled by the discrimination. But as a member of the human race, I am affected. I will stand by a person who is discriminated against. It hurts everyone when a member of society is beaten with prejudice. Moreover, I am the MOTHER of an autistic son and care about how he and members of his community are regarded. This is where it gets really tricky because he is my son, but I do not share his autism. This is where deep misunderstandings and complicated discrimination can begin — right in the family that is supposed to protect the child.
But a person is a person-first. I stand behind what autistics say. I want to be included as much as autistics want to be included.
Yes this section of the internet, hub call it what you will is misrepresenting neurodiversity to the opposition because “we” are not representing a wide enough spectrum of neurodiversity and have allowed the impression to proceed that neurodiversity is about autism only and that the creed of neurodiversity is only to prove that mercury has nothing to do with our being here.
If this hub had done better at representation the “opposition” would not have come away with the impression that neurodiversity originated here and that the bloggers here are the sum total of the movement.
Oh yeah and before you think that parents are singled out for attack, I have been critical of ANI and remain so. I am equal opportunities in terms of who I take to task.
I feel now as if I am being treated as one of the “opposition”
They don’t have horns, they are sorely deluded, some of them like Lenny and John Best are outright malicious for sure but sometimes I think the way the arguments have focused too much on mercury has led to an increase in the divide and a hardening of positions on both sides, it has not led to a clearer exposition of neurodiversity.
Give me the research grant and I will gladly find time to subject the entire output of the autism hub to content analysis and give you your evidence, but I think it would be a little pointless right now.
You are woefully misreading me at the moment, and the more I write, the greater is that opportunity to get it wrong how I come accross, and what you see.
All of us when reading bring something of ourselves to what we read. What I see may not be what you see being closer to a particular viewpoint than I do, but I can tell you now that the overall message of the blogging I read is not the one I wish I were reading. To say more is to risk fanning the flames further which I will not do. I have broken some eggs, and now I want an omelette which we can share OK.
Estee, you may want to be included, but you should not be a leader IN THE AUTISTIC MOVEMENT (fortunately, I don’t think you have done that, even with the great work you have done with AAC, which I fully support your involvement in). This is no different than the woman’s rights movement – men shouldn’t run that, even if they are fathers of woman, anymore than non-autistics should run the autistic movement, even if they are mothers/fathers of autistic people.
Yes, there’s a place for you. Yes, I love when people like you do things that help us (like the AAP).
But the idea of “I get to have a voice in a disability movement because we are all people” needs to either be applied everywhere or nowhere. Yes, you should have a voice as a parent – no one objects to that, but the voice is not as “important” in the autism movement as the voice of an actual autistic.
I know that sounds harsh, discriminatory, and exclusive. And it is. But it’s also the only way we can get a voice for ourselves.
Non-autistic parents need to continue to speak up. No problem. Just recognize that autistic people need to have the control over the reigns of the autistic community.
And I’d say the same thing when it comes to parenting. I might be able to give advice (some of it might even be decent) about that, but I wouldn’t presume to lead a parent movement, as I think parents can do that just fine themselves. I might *help* so long as actual parents had no problem with what I was doing. But there’s a difference between those two things.
I don’t consider myself a leader, but perhaps others have coined me as such. Are you saying I should dump TAAProject which so many autistic people now drive and participate?
As I said in my MIT presentation “all I am is a mother of an autistic son and I feel passionate about him.” It has been the driving force behind it all — Adam. As I mentioned to Phil and Amanda while in Boston, I would love to hand over the reigns one day.
I envision an autistic executive director and myself as founding director, but so far, no one has accepted. I still believe in working together AND having orgs that are exclusively lead and run by autistic individuals. As I said in my earlier comment, autistic children and non autistic people live together everyday and so too should an org reflect this “working together.”
Finally, if you want an org solely lead by autistics for autistics…DO IT. Don’t just talk about it. There are others out there.
Joel,
btw: I agree that autistic people need to control the reigns. I want it to happen! I want to see it everywhere where it concerns autism. How? When?
Give us all suggestions. This is what TAAProject is ultimately all about!!!
Also btw:
Don’t take offense to my writing. These things need to be discussed.
Estee,
I’m not saying you should drop TAAP or anything like that right now, and I’m sorry I wasn’t more clear.
And I do worry that a lot of our allies (non-autistic people who are helping the cause) are going to drop out over this kind of discussion, when that shouldn’t be the intent at all.
It’s like much of the ettiquite questions that come up regarding disabled people – it ends up causing people to completely avoid disabled people because they are worried about causing offense, yet usually the people who know they might cause offense and are willing to be corrected are the very people we don’t want to allienate.
Yes, autistic people need to lead the autistic movement. I feel VERY strongly on that.
But that does not mean that allies of autistic people should pack up their stuff and go home, either. It does mean that there should not be huge concerns from our allies about making sure they have a “say” – we need to be recognized as, ultimately, the people who are most affected by what happens to us, and thus people who should have the most say in these things. I know that’s harsh, but I do believe it.
If someone wants to make a group of autistics + non-autistics, that’s fine, but please don’t claim it’s self advocacy or should have a louder voice than autistic-run groups. If you’re not doing that, I doubt you’ll raise my heckles any. I support many groups (including TAAP) that are not exclusively autistic-run, although I’d prefer to see truly autistic run groups (not necessarily in day-to-day activities, but certainly at the board level). Unfortuantely autistic people don’t typically have a lot of experience doing these things, we’re still learning, and it’s hard to find the few that actually have done leadership in world in other areas, since we face so much prejudice in employment. I also think one of the problems is internalized prejudice – many autistic people don’t believe autistic people could lead, and that’s something that we still need to work on within the autistic movement.
This is a really important discussion, and I’m sad to see many people who are doing great things for autistic people are considering stopping that – that would be a serious blow to autistic advocacy indeed. But at the same time, this discussion needs to happen. I do hope everyone (including autistic people) can leave their egos out of this and let the discussion progress without feeling attacked or stepped on or singled out. And, yes, I do believe autistic people (and not necessarily Joel) need to drive this discussion. I worry that Kevin’s blog doesn’t have wide enough readership to get a true cross-section of autistic people.
“If someone wants to make a group of autistics + non-autistics, that’s fine, but please don’t claim it’s self advocacy or should have a louder voice than autistic-run groups.”
I couldn’t agree more. TAAProject doesn’t do this (I don’t think you are specifically referring to TAAProject here). We don’t do or proclaim anything more than what is in our mission statement. I wrote a post on this issue because it is hitting THE NAIL ON THE HEAD in every way — the concerns that autistics have, as well as concerns I have. I would rather our autistic board members be present at every political meeting and policy meeting regarding let’s say for example, education where it concerns people like my son. I would be much more comfortable in fact.
Through growing alliances with the Autism Self-Advocacy Network, for instance, we hope to get the issues even in the minds of people here in Ontario. The problem is: it isn’t. At all. Orgs like Autism Speaks and other parent groups have taken utter control. Autism Society of Ontario does not have the respect from autistic people who do not feel served by them.
Some autisitcs keep trying — to participate and progress is too slow in getting the public to “get it” that this is an important social issue
So YES YES YES — we need more groups made and lead by autistic people.
I also think (and see) that not every autistic adult I’ve spoken with is comfortable with advocacy. This is a serious issue if autistics are going to “be heard” in the public arena.
TAAProject is not averse to advice and criticism. We need it to learn and to serve better. This is why we have autistic adults on our board (and we are working to gather more), as well as an advisory.
I don’t want to see people segregate themselves — that is my one concern. I do think there is room for more — more autism orgs lead by autistic people and orgs like TAAProject which has people working together in order to learn and develop the sensitivity we need to create the access that is required.
As far as Kev is concerned, he is a true Mensch. He started Autism Hub so that we have come together like this to have this discussion.
Why don’t we get this into a larger arena so that autistics can respond to this dialogue? I agree that no one should feel attacked, that we all have vested interest in seeing autistics in control of issues concerning autism.
I’ve been following this series of posts, and have been enlightened by the varying perspectives. I sincerely thank all of you for opening my eyes to issues I never considered.
As an outsider to the Hub and/or community, I would like to preface my following comments by stating that I mean no disrespect to anyone, but am merely trying to lend an outsider’s perspective on what I see evolving (or, maybe devolving) from the current dialouge. Feel free to disregard in its enitirety.
Observations as I see ’em:
1) Having a handicap does not necessarily make you an expert on said handicap. A unique perspective and insight, yes. But a low-income autistic is going to have a wholly unique life experience than an upper-middle class autistic, etc…etc.
2) I think saying any autistic would necessarily be a better representative than a non-autistic is a generalization with potentially dangerous ramifications. Furthermore, if followed to its logical conclusion, then a low functioning autistic would necessarily be the best representative.
3) I think Larry and Joel’s arguments, while admirable, fall in on themselves because they presume a best case scenario.
4) I think water seeks its own level. Therefore, a leader will naturally arise from out of the autistic community. If he/she be a non-autistic, then so be it. However, if one is thrust upon the community (i.e., via designation by the media) then it is up to the community to voice its opposition.
5) “Me against my brother; me and my brother against our cousin; and me, my brother and my cousin against the stranger.” Take heed as this works in reverse too.
Again, I in no way mean to say who should or should not lead…it is not up to me nor is it my point. I merely caution against exclusion of any kind (intended or otherwise)
…remeber what they say about good intentions.
I have nothing to add here except that I think threads like this are a perfect example of why so little has been accomplished in the disability rights movement for the past decade or two. If it really matters that much to people who makes up the whole of these groups and turns into an identity politics game, it ends up losing. Autistics will always be a minority, this is a simple statistical reality, and I know some people may not like this fact, but from what I’ve noticed is that parents who promote disability rights simply sometimes come across as better advocates than the childfree members of these movements. Shared experiences matter a lot if you are interested in influencing public perception.
And finally, what bones.0504 said.
Can I butt in with a question?
Fot those who can, or choose to, articulate on matters, is being autistic like being gay, in that it’s a self-designation?
Or is it like being black: in that other people tell you that you are?