If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.
I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.
But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.
I’ll be frank. Every section had something objectionable in it.
Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.
Introduction, or, “we are united”
[Letter]November 12, 2008
RE: Concerns on Draft IACC Strategic Plan
Dear Members of the IACC:
The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.
Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”
That’s been discussed a lot (feel free to join in) here and here.
But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).
Bullet Point (a), or “no Urgency”
[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.
Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.
What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.
Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.
Ignoring the underserved is a truly shameful position that these organizations have taken.
However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:
[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.
Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.
Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.
Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.
More to follow…
Left Brain Right Brain 
It certainly doesn’t represent the kind of views I see on the Autism Hub, and then there’s the overwhelming majority of adult autistics that don’t seem to take an active role in advocacy.
Once all these views are enumerated and presented, the picture of what the autism community wants will look very, very different.
I am NOT, and never will be, a member of the “autism community”. However, I’m happy to identify as a member of the “autistic community”. The difference of those few letters takes out all the confusion, the ambiguity, of who is on whose side. Case in point:
http://autismcrisis.blogspot.com/2008/11/verbatim-autism-advocacy-rules.html
Michelle writes about the “autism community”
and what the “autism advocates” (who don’t allow any autistics in their organizations), in Canada do and believe, i.e., the elimination and eradication of autistics. In the comments section, Larry, in all the obtuseness that only he could muster, attacks and accuses her of espousing those same ideas. This is only an unfortunate misunderstanding caused by those couple of letters’ difference. Michelle is one of the Finest autistic advocates we’ve been blessed with.
Another one is Frank Klein, who, when he started his List, used all of the preciseness of language that only he could muster, naming it “Autistic Advocacy”. This was no oversight or mistake: Autistics advocating for themselves is autistic advocacy. A bunch of hysterical parents, teachers, celebrity martyrs, “therapists” and such writing, kvetching, talking *about* autism would be “autism advocacy” as practiced by the “autism community” in Canada, also the US and UK.
We’re not “them”, i.e., Harold Doherty, Sabrina Freeman, or Jenny McCarthy.
We’re autistic. BTW, all of our “allies”, whatever their relationship to autism, are of course welcome in the “autistic community”.
Yeah Clay but Larry doesn’t understand science. It just isn’t his thing at all. Therefore he just does not get that most of the advocates – parents and professionals, have for years and years been spraying scientific bullshit about autism and autistic people and getting away with it. No ethics and no science. An awful lot of what’s wrong with advocacy as conducted by these parents and professionals is because it simply is not factually based, so how is it going to do anybody any good? This is what advocacy looks like? Yes, obviously even though we know it’s not supposed to be like that, so much of it is.
That is the current reality and looking at that letter, they want to keep it like that. Well, they should not. While they’re harping on about false epidemics, the research dollar gets sent down some black hole somewhere – to the detriment of everybody. So yeah, time to object.
I’m beginning to think that a huge amount of the advocacy and research of all kinds is wasted effort – when applied to the situation of HFA’s.
The many problems we face don’t require scientific intervention – they need an understanding of difference and accommodation, not genetics and eradication.
Brought to you by Firefox 3 running on Ubuntu 8 – there is intelligent life outside of Windows NT.
In my opinion, the problem comes not from whether “Larry does/doesn’t understand science” (or conversely, “Michelle does/doesn’t understand the history of social movements”) but from a fundamental disagreement over whether the co-opted terms “autism community” and “autism advocacy” are worth the effort it would take to reclaim them.
I can see valid points on both sides, but the manner in which the debate is being conducted seems needlessly vehement and ultimately unproductive. There’s no reason why the subject can’t be discussed in a calmer, more civil manner.
Taking part in consultation exercises like:
http://www.cambridgeshire.gov.uk/social/selfdirectedsupport.htm
is worth a terabyte of Internet discussion…
Thauts
I didn’t think we were all that vehement. Anyways, noting the Socrates link, there could be a lot more services like that in being if the money wasn’t wasted on chasing false epidemics. Though Socrates, this is the UK, where autism and autistic advocacy has some sanity. You have to venture to this side of the Atlantic for the fun stuff – 90% institutionalisation without heaps of early intervention, epidemics and lots and lots of doom and gloom in general.
I had a brief rummage through the scientific literature on early, intensive intervention – came away with the impression that a lot of professional think it’s a waste of time and effort and autistics will develop at their own rate with just the normal day-to-day stuff that parents do with their kids anyway.
Alyric said”
“Yeah Clay but Larry doesn’t understand science. It just isn’t his thing at all.”
It certainly isn’t. But he at least should be able to understand that when Michelle quotes a Canadian “autism advocate”, it isn’t her saying it. How could he not understand that she has already done more for autistics than most of us could dream of?
thauts said:
“a fundamental disagreement over whether the co-opted terms “autism community” and “autism advocacy” are worth the effort it would take to reclaim them.”
Right. Except that what I’m saying is that there is no amount of effort that would be sufficient. The words have already been co-opted. Or do I mean “usurped”? Quick, name an “anti-autism advocacy” group that has “autistic” in it’s name. I think they all use “autism”, right? Now, we’ve had “Autistic Network International” for many years, and “Autistic Advocacy” for almost as long. This has been the common usage, I just want it recognized.
“They” are not going to come along and start using “autistic” because they simply aren’t.
“We” must claim it to avoid any confusion in the public’s and politician’s minds about who is on whose side.
The idea that “no amount of effort would be enough” is something of a self-fulfilling prophecy, though. If the majority of self-advocates believe that it cannot ever be done, it will not ever be done. Of course, even if it’s possible the question still remains as to whether it’s advisable, but…
I’m really confused as to why you are asking me to name anti-autistic organizations using “autistic” in their titles; they have no right to that claim even if they were not so strongly opposed to it, and I have absolutely no desire to see them pick it up. I can, however, think of a few organizations and groups driven by autistics and our allies which use “autism” in their names- including both ANI (at least, the last time I checked- it may very well have changed since) and this very blog and the Hub it resides on.
Self-advocates using “autism advocacy” or “autism community” when those terms are also claimed by those advocating against our rights is a potential cause of public confusion. The existence of an “autism community” that excludes autistics, an “autism advocacy” that advocates against autistic interests, or an “Autism Speaks” that silences autistic voices… that is ALSO a potential cause of public confusion. Larry obviously believes that the confusion that could be caused by the former would be worth ending the confusion caused by the latter. You apparently disagree. Myself… I don’t know. As I said, I see valid points on both sides.
In any case, I feel that the topic shouldn’t have been raised where it was (however counterintuitive Michelle’s phrasing may feel to people accustomed to ‘advocacy’ as used by other social justice movements, she’s generally very good about defining her terms), nor in the insulting manner that it was. And as Socrates points out, there are much better things we could be doing with our time than attacking each other over the internet.
Let me just add that I’m trying to be consistent with other preferences we have, such as that we prefer to be called “autistic” instead of being told that “person with autism” is somehow better for us.
My preference for “autistic community” and “autistic advocacy” over “autism community” and “autism advocacy” is totally in line with that, and provides differentiation between us and those who should rightly
be called “anti-autism” groups. And it’s those same jerks, who refuse to respect our preference for “autistic” instead of “person with autism”.
To me, it isn’t just a matter of semantics, if it serves to delineate who is on which side. And those few letters’ difference can serve that purpose.
Clay, you say; “To me, it isn’t just a matter of semantics, if it serves to delineate who is on which side.”
In to which group would you place the non-autistic parent of an autistic child?
Another voice said:
“In to which group would you place the non-autistic parent of an autistic child?”
This was already answered in my first post above:
BTW, all of our “allies”, whatever their relationship to autism, are of course welcome in the “autistic community”.
They place themselves, by their knowledge and beliefs. There have always been non-autistic parents in ANI-L or AutAdvo, for instance, and there are many such who are bloggers here on the Hub. We’ve always welcomed them as allies, unless they want to talk about “curing” us, or suing vaccine makers.
Clay, a closer read of your first post did clarify things.
thauts said:
“The idea that “no amount of effort would be enough” is something of a self-fulfilling prophecy, though. If the majority of self-advocates believe that it cannot ever be done, it will not ever be done.”
Okay, let’s think about it. How are we going to make them call themselves “anti-autism advocates” instead of appropriating what should be our own terms? We can’t. It’s already in the organization names, on their letterheads, etc. They are simply not going to change what they call themselves to appease us.
“Of course, even if it’s possible the question still remains as to whether it’s advisable, but…”
Please tell us how it might be possible. Work on it, thauts, this isn’t a waste of time if you come up with *the answer.*
“I’m really confused as to why you are asking me to name anti-autistic organizations using “autistic” in their titles; they have no right to that claim even if they were not so strongly opposed to it, and I have absolutely no desire to see them pick it up.”
I’m sorry, I thought my point was clear. No, of course they have no right to that claim, and its not a claim they would *want* to make.
That means they wouldn’t usurp “autistic” as they did “autism”.
“I can, however, think of a few organizations and groups driven by autistics and our allies which use “autism” in their names- including both ANI (at least, the last time I checked- it may very well have changed since)
I’ll stand corrected on that one, it *is* Autism Network International. Silly mistake on my part.
“and this very blog”
You mean, LB/RB?
“and the Hub it resides on.”
Actually, it makes sense to me that its the Autism Hub, as everything on it is *about* autism.
“Self-advocates using “autism advocacy” or “autism community” when those terms are also claimed by those advocating against our rights is a potential cause of public confusion.
The existence of an “autism community” that excludes autistics, an “autism advocacy” that advocates against autistic interests, or an “Autism Speaks” that silences autistic voices… that is ALSO a potential cause of public confusion. Larry obviously believes that the confusion that could be caused by the former would be worth ending the confusion caused by the latter. You apparently disagree.”
I’m not sure. I’m still trying to figure out that last sentence. “the confusion that could be caused by the former would be worth ending the confusion caused by the latter.” *We already have* the existence of an “autism community” that excludes autistics, an “autism advocacy” that advocates against autistic interests, or an “Autism Speaks” that silences autistic voices…and there’s not a thing we can do about it.
“In any case, I feel that the topic shouldn’t have been raised where it was”
Actually, I was mildly disagreeing with Sullivan’s last sentence, “it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.” I replied that I’m not, and never will be part of the “autism community”. I see no “greater autism community”, which includes our side,
(autistics), and the likes of Doherty, Freeman, McCarthy, JB Handley, JBJr. That’s not any sort of community, its a battleground.
“(however counterintuitive Michelle’s phrasing may feel to people accustomed”
Again, it’s not Michelle’s phrasing that’s at fault. I mentioned that even Larry totally misunderstood that when she said that the aims of autism advocacy were the elimination and eradication of autistics, he took it to mean that *she* was saying that.
“to ‘advocacy’ as used by other social justice movements, she’s generally very good about defining her terms), nor in the insulting manner that it was.”
Who is it that you thought was insulted? Larry? Excuse me, but how long have you known him? I’ve known him nearly 8 years.
So I said he was being obtuse. Hell, we can all be that way sometimes. (He’s just better at it than most.) 😉
“And as Socrates points out, there are much better things we could be doing with our time than attacking each other over the internet.”
I didn’t see him say that, but I did see where Alyric told you that she didn’t think we were being all that vehement. It could be that you have a low threshold for such. And I thought I was being calm and civil. Please go to Michelle’s blog if you want to compare what I said to some *really*
uncivil and insulting remarks, which were, uh, yeah, made by Larry.