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Tuesday, February 22, 2011


Michelle Dawson

In my view the question "Must every autism organization have autistics in leadership positions" is meaningless.

This isn't about "every autism organization." I doubt there's anyone who knows about every autism organization. Why not address the genuine question about ASF?

For clarity, I've commented on several autism organizations (major new organizations which take public positions involving autism research, e.g.), but that is only "several" not all or every--or even close.

Broken Link

Michelle, could you answer my question: Can you direct me to some evidence that autistics have been "publicly excluded" from leadership positions in ASF?

Michelle Dawson

See ASF's leadership page, where ASF publicly lists ASF's leadership.


How is it bad science, exactly?

Michelle Dawson

Excluding those most affected by research from having a major say about the priorities etc. of this research is bad science, as well as bad ethics. See Evans et al. (2006) for a primer.

Apologies in advance if any of the above is offensive to Ms Wombles.

And would someone answer a genuine question, please? Why do Liz Ditz et al. support a major autism funding body that publicly excludes autistics from its leaderhips? Many thanks in advance.


Michelle, not having an autistic in a leadership position is a lot different that *excluding* autistics from leadership positions. Do you even know that a qualified (appropriate degrees to manage/market a nonprofit, resume showing similar work in the past, etc) autistic person as applied for such a position at ASF?

Michelle Dawson

It's possible, in fact it's easy, to set up a major autism organization with a leadership structure that ensures autistics are excluded (you can do this with blind people, deaf people, women, etc...).

And no, it isn't different. Also see my previous comments, so I don't repeat myself.

Still waiting for an answer to my genuine question. Again, thanks in advance.


Previous comments on this thread? I don't see any that answer my question, could you direct me to them?


And to answer your question: we (well, more specifically, I, but I think others will agree) support ASF because they support a science-based approach to autism research. As I have seen no evidence that they are intentionally excluding autistics from leadership positions in this small (compared to AS and ASA), relatively new organization, that allegation does not affect my opinion of them. Show me proof that they are being intentionally prejudiced and that opinion may change.


Also, you reference Evans et al. 2006... can you be more specific? Evans is a very common name and I'm having a bit of trouble finding what you're talking about.

Michelle Dawson

See my comments imported from the previous thread. I haven't mentioned intentions.

See the James Lind Library for Evans et al. See also the Publications section of the James Lind Alliance.

Excluding autistics, from the outset, from a major autism funding body, is not science-based. And an autism organization that isn't open to genuine criticism is not science-based.


No, you're right, you didn't mention intentions. Everyone just interpreted the word "exclusion" as being active. So, let me see if I understand your position: to do their work properly, any national autism advocacy/research funding organization needs to be founded in conjunction with an autistic individual/group? I can see the advantage of having a person (or many people) with autism on the board, but saying it's necessary and condemning those organizations that don't is extreme to me. I'll hunt down the Evans article and see if that sorts it out for me.

Also, what evidence do you have that ASF is not open to this sort of criticism? Should they be actively recruiting people with autism to their board? WHat if they're just not in a position to hire at this time.

Michelle Dawson

The bits that are related to views I've actually expressed are all answered in my existing comments (including those copied in the original post, above). Not good at repeating myself in different words, sorry.

In fact, according to views expressed by others here, I shouldn't be involved in autism research. Always easy to find ways and reasons to exclude autistics. Chances are I've heard them before, many times over.

Elaine Park

I think that not having people with autism involved in these types of organizations makes it too easy for them to slip into the "autism is an evil thing that must be erradicated" mode of thinking which is rather insulting to many people on the spectrum. I would think that not insulting your target population is an important thing for a helping organization.

Plus adults and adolescents on the spectrum have invaluable insight into the kinds of support and assistance that work in real life. This is helpful data that no organization should be ignoring.

Finally, having people with autism in leadership positions gives a strong message that they are human beings with value and worth who deserve to be treated with respect and dignity. I don't think people can hear this enough: Different does not equal invalid. How better to shout this from the rooftops than by the object lesson of inclusion?


Michelle, is this the correct Evans et al.? It has a new foreward dated 2010.">">

Chapter 7 in particular discusses consumer/patient involvement, if anyone is interested.


Here is an especially good quote that was reprinted in Evans et al.

"Who has the power to see that research questions actually address the greatest needs of patients in all their misery and diversity? Why aren’t the most relevant questions being asked? Who is currently setting the questions? Who should be? Who shall direct this prioritisation? Patients are best able to identify the health topics most relevant to them and to inform their comfort, care, and quality of life, as well as its quantity. The patients are the David, who must load their slings against the Goliaths of the pharmaceutical companies who need evidence to market goods and make profits, and trialists who are driven by curiosity, the need to secure research money, professional acclaim, and career development. Profit, scientific inquiry, grant money, and research papers are acceptable only if the central motivation is the good of patients. Independent patients and organisations that advocate good quality research should ready their sling, carefully choose their stone, take aim, and conquer."

Michelle Dawson

Many thanks Amy, that's it of course. I didn't know whether it was okay to post links here.

Liz Ditz

I apologize for being absent from the discussion today,as a looming deadline is still looming.

Michelle said yesterday,

In my view the question "Must every autism organization have autistics in leadership positions" is meaningless.

Point taken. I was trying to broaden the discussion -- in other words, not just target ASF but include other organizations, and wrote inaccurately.

This morning, Michelle asked

Why do Liz Ditz et al. support a major autism funding body that publicly excludes autistics from its leaderhips? Many thanks in advance.

Esattezza wasn't speaking for me, but expressed my views:

[I] support ASF because they support a science-based approach to autism research. As I have seen no evidence that they are intentionally excluding autistics from leadership positions in this small (compared to AS and ASA), relatively new organization, that allegation does not affect my opinion of them. Show me proof that they are being intentionally prejudiced and that opinion may change.

Yes, links are welcome here. You can also use [a href="linkurl"]linktitle[/a] (replacing square brackets with the pointy ones).

I went back & edited Amy's comment to make the link live.

Michelle Dawson

Thanks. Except that just restates the obvious: it's widely considered admirable, and science-based, for ASF to publicly exclude autistics from their leadership. I'm asking why.

The fact of ASF's public exclusion of autistics from ASF's leadership is on the record. For why this is not science-based and generally not okay, see my previous comments (all of them).


Thanks for fixing the link!

Also possibly of interest...I recently noticed that a Prader-Willi Syndrome association has an advisory board of PWS adults.

Looking around some more, I found that the National Down Syndrome Society here in the US lists an advisory board of Down syndrome adults called the "Self-Advocate Advisory Board" here. Also, the Canadian Down Syndrome Society lists a "People with Down Syndrome Committee" here.
(Hoping I got those links right!)

I wonder how many organizations do this sort of thing and how many don't. I really don't have much experience or knowledge about this and never thought about it until recently, but I think it's a good question.


When we say ASF is science-based, we are not speaking to whether it funds the research that people with autism most want funded, or weather such people are on the boards. In fact, there are some autistics that desperately want to see more funding for vaccine research (Jake Crosby comes to mind) - this is most definitely NOT science-based. Science-based simply means putting funding towards viable, answerable questions.

I'm not sure how you're interpreting what I and others have said as meaning "widely considered admirable, and science-based, for ASF to publicly exclude autistics from their leadership". In fact, Liz and I have both said that our opinions of ASF are likely if we find proof that they are intentionally barring autistics from leadership roles. I'll even go one step further and say I would commend the appointment of autistic people to a community outreach board of ASF, or, even to other high-level appointments, assuming they have the appropriate qualifications (that is - the same qualifications as any NT applying for the position). However, I don't think the fact that they have not yet is cause for significant alarm. I understand Elaine's point that failure to include autistics has the potential (note: POTENTIAL) to lead to the "disorder to be eradicated" model of autism, but I do not see that happening at ASF (at least not to a greater extend than any other major group).

Michelle Dawson

I generally disagree that science involving human participants should be ethics-free (see the Declaration of Helsinki, for starters).

I find it kind of absurd that the fact that autistics (like all humans--especially scientists) can be wrong is used as a rationale for publicly excluding autistics from the process of science. That's exactly backwards. When autistics are so publicly excluded, when we're told that's what it's all about, why be surprised when some autistics reject science?

As usual, my views are mainstream in non-autism areas. It's only due to the ardent support for fringe views in autism research that these fringe views, such as the exclusion of autistics (for our own good of course), are so dominant.

And the point is being made, again, that I shouldn't be involved in autism research. To think that for a moment, back when, I naively hoped that there was a good example set here, of what autistics can do given the opportunity.

Liz Ditz

Dear Michelle,

I am grateful to you for bringing this topic up. I define the topic as "people with autism should be in leadership roles in autism organizations".

I would like for you to clarify something for me that I don't understand. You wrote:

And the point is being made, again, that I shouldn't be involved in autism research.

I sincerely do not understand how the conversation here lead you to conclude that I shouldn't be involved with autism research.

I am missing something. Please tell me what I am missing.

Michelle Dawson

Statements like "assuming they have the appropriate qualifications" and "the same qualifications as any NT applying for the position" etc.

Seems unlikely I would be allowed to do what I do under those conditions. I've never attended university as a student. I'm probably inappropriate as all get out.

Broken Link

Maybe I should not be commenting here, but I will anyway.

From my point of view, it would be valuable, and in fact, essential, to have autistic people involved with a science-based autism organization, even if they were not as fully "qualified" (in the conventional sense) as a non-autistic scientist.

What is missing from this discussion is any evidence that ASF has purposefully excluded autistics from their leadership. Yes, they do not presently have any declared autistics in leadership positions. But this is a relatively young organization with a very small staff and a small group of advisers. Speaking only for myself, I'd hope that is is an oversight, and a side-effect of their youth. And that they would work to change that situation in the near future. But then, I'm an optimist.

Liz Ditz

Broken Link, as the blog proprietor, I very much think you should be commenting here. Thank you for coming back and commenting.

Michelle Dawson

Sorry, I don't buy the "oops, we forgot the autistics" argument, not with a credible autism funding body in the current century.

ASF's leadership, apart from ASF's founder (declared to have an autistic child and sibling), does welcome declared parents (several), and grandparents (one) of autistics.

One reason I started looking specifically at *new* major autism organizations is that older organizations (eg NAAR, which carried over to Autism Speaks) used their oldness to justify excluding autistics. I guess that's irony for you.

Liz Ditz

Dear Michelle, Broken Link, Esattezza, Elaine, and Amy:

I've been thinking about this conversation all day.

My backstory: Over the past 25 years, I've been a board member of a number of nonprofit organizations, both start-up organizations (like the Autism Science Foundation) and those that have been in existence for some time. During that time, more than anything else, I've been involved with questions about govenance: what are the duties and responsibilities of the board do, should there be advisory committees, and so on. Governance is kind of a geeky area of non-profit service, but worth thinking about. My thoughts are certainly influenced by these experiences.

Let's talk about the Autism Science Foundation (ASF).

The Mission

The Autism Science Foundation's mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

What is the ASF's organizational structure?

There's a Board of Directors (BOD)

I assume the Executive Director (ED) serves at the pleasure of the BOD, and reports to the BOD (which is standard for nonprofits), but I could be wrong

There is also a Scientific Advisory Board (SAD).

So: what are the mission, duties, and responsibilities of the BOD?

What are the mission, duties, and responsibilities of the SAD?

Who is responsible for things like fundraising? How about preserving the mission? How about evaluating the mission for fit to the current climate? How about executing the mission? How about evaluating how well the organization is meeting the mission?

These are big-picture governance questions, that are possibly unfair to pose to an organization as young as ASF. The questions for very young organizations are: (1) Define the mission (2) Organize to raise the resources to begin to address the mission.

The big question for ASF, in my view, is to (1) "raise capacity" -- in other words, to build the infrastructure they need to raise money to (2)fund research on autism that is based on sound science.

Liz Ditz

I would just like to say that Michelle posted her comment, which I did not see, as I was posting my own. In other words, since mine came after hers did not mean I was responding to her in any way.


Esatezza and Broken link, what if we were talking about a Women's Health Science Foundation that was led exclusively by men? Would it seem so weird and annoying for a woman to come along and say, wait a minute, there ought to be some women in your leadership, and I mean on your board, not in the ladies' auxilliary. It seems self-evident to me.

Broken Link

I agree, Anne. It should be self-evident. But that doesn't mean it is simple. That's because the situation is a little different. Women are 50% of the population, autistics ~1%. That limits the availability of people willing and able to serve in these leadership positions.

The other thing that I would like to point out is that I keep saying "declared autistics" for a reason. Many undiagnosed people on the spectrum work as research scientists. As a scientist, I see this everyday, when I go to conferences, etc. If they were children now, these people would receive an ASD diagnosis. Given that there are people who are both 1. relatives of diagnosed autistics and 2. research scientists, in leadership positions, I think it is not improbable that there are already (undeclared) autistics in ASF leadership positions.

Perhaps we can attract Alison Singer to this conversation so that she can comment directly.

Michelle Dawson

So as long as there are parents and scientists involved, no need to even think about including autistics? I've heard that one before too.

ASF's leadership puts a lot of importance on declaring family members (children, siblings, grandchildren) to be autistic. Why would they *not* declare themselves to be autistic, if this is the case? It's good for their relatives, but bad for them?

Also, ASF is an autism research funding body, which cannot exist unless there are autistic study participants, who usually have to be diagnosed. Diagnosed autistics have the paramount interest in funded autism research. We most experience its benefits and harms; we live its consequences every day. This is not the only reason diagnosed/declared autistics need to be in ASF's leadership, but it is a very important reason.

If there aren't a lot of very willing and able declared autistics pounding on ASF's door, then (as I wrote before) ASF is in big trouble, scientifically and ethically.


Michelle, you're misreading what I'm saying. I'm not saying that autistics shouldn't be involved or shouldn't self advocate. See Amy's examples for Down Syndrome. I would totally support a setup like this for any and every autism organization.

My point is simply that being autistic doesn't automatically give someone expert SCIENTIFIC knowledge of their own disorder, nor does it give them the expertise to run a non-profit. Recruiting autistic people that HAVE this expertise would be a great thing for any autism organization to do, but this would be an active search and I find it reasonable that ASF has not yet done this. Earlier, Elaine said: "having people with autism in leadership positions gives a strong message that they are human beings with value and worth who deserve to be treated with respect and dignity." I totally agree with this, but, if you were to put a person with autism in a leadership role that they were not qualified for, that would NOT be treating them with respect and dignity, that would be making them a figurehead and pandering to public emotion.

What being autistic DOES automatically do, is make a person an expert in explaining to the scientific community what sort of research would most benefit them. I agree with Broken Link that I'd like ASF to put a self-advocacy board in place in the near future. In fact... they already HAVE something like that in place when it comes to deciding what grants they will fund.

From the RFA for graduate student fellowships:

"Proposals will be reviewed by members of Autism Science Foundation Scientific Advisory Board as well as active and experienced investigators recruited from the scientific community for their expertise in the research areas of the proposals. Proposals will also be reviewed by a panel of experienced laypersons (parents, individuals with autism, other advocates) who will provide input to the Scientific Advisory Board."


Also, Michelle, you said:

"Seems unlikely I would be allowed to do what I do under those conditions. I've never attended university as a student. I'm probably inappropriate as all get out."

I went to your site and saw that you work at a hospital and have published a number of papers. Given that you never attended university, how did you find yourself in that position? My point is that I doubt someone just said: "she's autistic, maybe she should do this". Degrees are great, quick measures of how likely a person is to be qualified for a position, but not necessarily the only measure. (Look at Bill Gates) But getting to a leadership position without such a degree, status on the spectrum notwithstanding, is the exception, not the rule.


Also... sorry for the caps for emphasis. Not all of the places I post use html formatting. I'm not trying to yell. Had I noticed that this blog does sooner, I would have used italics. :/

Michelle Dawson

Reminds me of Autism Speaks publicly putting down my IMFAR 2009 study as the work of a "self-advocate." I'm not a self-advocate. None of the other scientists whose work AS described was called a "self-advocate."

I'm again being told I should not be involved in autism research. Please tell me how and why my involvement in autism research is wrong and should not have happened.

Nonautistic scientists, clinicians, or relatives of autistics aren't excluded from ASF's leadership if they fail to be expert in all areas of autism science.

Some of ASF's nonautistic leaders (including on ASF's scientific advisory board) show no results for a PubMed search for autism-related publications. Others show only a small number of results.

I'm aware of ASF's anonymous panel (look around on ASF's blog, for an ASF promise that a year later hasn't been fulfilled). In my view, reviewers should be named. Still don't see any autistics in ASF's leadership.

Michelle Dawson

Responding to messages I didn't see... re how I did what I did, the answer is that I was given the opportunity.

Also, I didn't listen to all those many (CIHR, CAIRN, Autism Society Canada, NAAR, the Canadian government, etc) who told me over and over that autistics like me aren't bright enough to even be in the room when autism research is being discussed.

See Silverman & Brosco (2007), Feinstein (2010), Eyal (2010), Lajonchere (2010), many others, for how (some) nonautistic parents, many with no formal scientific qualifications, have for decades dominated autism research with their priorities, standards, demands, etc.

Meanwhile everything has been done to discourage autistics from even being interested in autism research.


"I'm again being told I should not be involved in autism research. Please tell me how and why my involvement in autism research is wrong and should not have happened."

No, no you're not. You're being told: kudos for accomplishing what you've done. Not everyone, autistic or otherwise, would have been able to. ok, maybe I was light on the kudos the first time through, but, seriously, I'm impressed with what you've accomplished. And before you take that badly: I'm not impressed because I have some preconception about what autistics are and aren't capable of. I'm impressed because, as a grad student, I know how difficult it is to become a scientific expert in a field, and all the more impressed that you have done it without formal training at university.

It's frustrating to me that you make statements like "everything has been done to discourage autistics from even being interested in autism research." From what you've said about the autism groups you've encountered, I can tell you've had some bad experiences, but you're not providing any concrete examples of it. I certainly don't think I or anyone else here would intentionally discourage autistics from being interested in autism research. I welcome it. In fact, I'd like to see the autism community not only be interested, but more actively steer and conduct research, much as you do. Throughout this entire discussion, my major point has been only that the wishes of autistics (or of parents of autistics, or of politicians, or of anyone without a good understanding of the scientific process) shouldn't trump what the scientific evidence says is useful to pursue. (ie: a proposed line of research could be the most helpful thing in the world to the autistic community, but if we do not currently have the technology to study it, it's still a waste of funding because we won't be able to get an answer.)

Ideally, (to me) scientists who are experts in autism research would have open conversations with autistic individuals. Each group would approach the conversation with research topics they want funded. The scientists will chose those topics that autistic individuals bring up that are most viable for scientific research, and the autistic individuals will choose those topics from the scientists' lists that they believe will most benefit them, and those things that the two groups agree on get funded. Scientists who also happen to be autistic can have a say on both sides. And I think this is being done, maybe not as much as it should be, but it is. Also, as I'm sure you know, it's common practice for grant reviewers on any subject to be kept anonymous, at least until after the awards are announced, so I don't think we can complain about that just yet.

Michelle Dawson

My website documents examples of how autistics have been discouraged and banned (blog has a bit too I think). There are many more. I've also been extensively defamed.

I'm not making it up, sorry. I'm understating things. I don't think such extreme intolerance should be made light of.

Most of what I've done has involved violating business-as-usual in autism research. So far (and doing science means you will probably be shown to be wrong, eventually) this has been productive.

E.g. I've refused to accept arguments (many) from very qualified scientists that a particular study design was impossible (it wasn't, paper is published). Lots more in that direction.

Of course I argue at a scientific level, but if I'm capable of this (uneducated, no obvious abilities, old, no science background whatsoever, spectacular day-to-day difficulties), so are a whole lot of autistics who are now being infantilized, segregated, excluded, etc.

René F. Najera

Excluding autistics from an organization that promotes the advancement of people with autism is not necessarily bad. Perhaps there are "closet" autistics? Does a museum of anthropology need cavemen in its leadership structure?
I don't mean to be funny, though I come off that way. My point is that if the organization does the work it's supposed to do, if it meets certain criteria for excellence and results, and it sticks to the strictest of scientific guidelines (for example, follows evidence and stays away from innuendo)... Then what does it matter who is on the board? Furthermore, I can see where it would be a problem if, say, women were excluded because women make up one-half of the population. By chance alone a woman could be on the board. If an ethnic group was excluded, I would not understand that, either, especially if the ethnic group in question makes up a sizable portion of the population in general.
See, this argument is almost like complaining that a company who has a board made up of two people and is for the advancement of the Irish has a protestant and a Black man on it. From a biostatistician's point of view, it's just a matter of ratios and proportions...

Then again, I could way off, and I'm open to suggestions.


"Of course I argue at a scientific level, but if I'm capable of this (uneducated, no obvious abilities, old, no science background whatsoever, spectacular day-to-day difficulties), so are a whole lot of autistics who are now being infantilized, segregated, excluded, etc."

Ok, I'll admit I haven't been through your whole website (I wasn't saying you were making it up, btw, I was just saying show me the evidence, and you've given me a lead to it, so thank you). But I want to be very clear, I'm not saying autistics aren't capable of scientific thinking (in fact, statistically speaking, they're probably better equipped than the rest of the population). I'm saying that the public (affected or not) should not dictate what science studies. This is just as true for people with heart disease as it is for people with autism. From the sounds of it, most of what you've done hasn't just "involved violating business-as-usual in autism research", but business-as-usual in research in general.

Liz Ditz

Still with the looming deadline.

I'd like to change the subject a little, to "what can people with autism do to be effective board members of autism organizations?" It's the same question, and the same answer, for people who don't have autism.

The answer is to become skilled in what nonprofit boards do, and how to be an effective board member.

The good news is that there are free, online courses. One I like is from CompassPoint, Nonprofit board basics.

There are other web-based resources at Webinars for nonprofit boards

René F. Najera

My wife just made the greatest point (as per usual)... She asked, "How many people with autism on Generation Rescue's Board?" Of course, this is "turning the tables" and not a good way of winning an argument (or debate), but I do like the way this woman thinks.

Broken Link

And, the answer is zero people with declared autism on GR's board, just as in the case of ASF.

Rene, GR is a terrible organization, not only because it doesn't have autistic people in leadership positions, but also because it promotes terribly damaging views about people with autism, and invasive, disgusting procedures meant to "cure" them.

From my point of view, on a scale of 1-10, with 10 being a perfect autism org, GR is a zero. ASF is not perfect either, I'd give them a 7. We should be aiming for orgs with 10's. Autistic people deserve better.


In the UK The NAS actively encourages participation from people with autism. In many cases logistics make it difficult for people with autism to participate, but what is requiired is for autistics to put themselves forward for leadership positions if they are comfortable to do so.


CAVEMEN? No one actually typed that, did they? Jeeze, it's the Geico commercial.

Even your last question is wrong, Liz, because it pre-supposes that the current structures for decision making are correct ones, and people with a minority viewpoint have to conform to them. But that's the purpose of diversity, of any kind; it brings in fresh viewpoints that energize the decision-making process.

If you have a board for an organization that raises money for deaf research, and you look for a hearing-impaired person who can fully participate in your conference calls, you've missed the input of someone who communicates by ASL. If you have a board that supports a peace process in the Middle East and schedule your meetings on Yom Kippur or Ramadan, you've lost the participation of people who won't attend on those holidays. YOU'VE lost. Diversity prevents losses to the organization, losses to the community as a whole, it's not just a handout to those poor little oppressed people, or a sop to the vanity of the people nice enough to try to lift them up.

It's not the same question and the same answer, Liz. Not at all. Just as the social sciences have been shaped by the participation of women in the research process, women who came with their own life experience that informed their approaches, so the physical sciences have responded to the input of scientists from all backgrounds, whose personal stories and motivations have changed the way we do science. Science is no longer a hobby activity of wealthy men. That's a pretty huge change, and in a short while.

So it behooves, in my opinion, any organization that wants to do the real science around autism to stir their stumps and work to get more declared autistics on their board, and in their organization as a whole. Not because it looks good. Because it's valuable, per se.

Michelle Dawson

Belatedly occurred to me that>this APS editorial might be relevant.


Would we even be having this conversation if what was at issue was an Indigenous/First Nation health research and 'advocacy' organisation run exclusively by white people? I sincerely hope not. So why is it a question that can be asked publicly about autism without even causing the questioner embarrassment?

John Ordover

All I can say is, my wife, Carol Greenburg, is autistic, is on the editorial board of TPGA and East Coast Regional Director of the Autismm Womens Network, and she would be more than happy - and is more than qualified - to be on any board of any autism organization. You can contact her at

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