Who can call themselves autistic?

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autistics.org has put out an editorial on the letter A Danger In Speaking that was sent out by Tom McKean to various leaders in the autism community, urging them to get formal diagnoses to prove that people are autistic before they speak at conferences.

Details can be read in that editorial called, Who can call themselves autistic?

To clear up a few misconceptions before they start: We’d have written this no matter who wrote that letter. This is not personal in that sense. But it’s certainly personal in the sense that it affects any autistic person who wants to speak publicly as autistic. We now have an autistic person encouraging people to demand private medical records and early histories from autistic people before we can be taken seriously, and that could be taken as the carte blanche conference organizers and such want.

The point in refusing to give out such credentials in that context, is that not everyone has them. It’s not right that, for instance, I could speak at an autism conference about being autistic, but someone just like me with no official diagnosis (or with a misdiagnosis) couldn’t. It’s not even right that a person be required to give out private information of that nature, that they could have a lot of good reasons for not divulging. In refusing to do so, we’re refusing to play that game of legitimizing people’s claim to being autistic, and therefore apparently our opinions, based on official medical labeling.

So, if you want to sign it (after you’ve read it), email whoisautistic@gmail.com.

Apparently the misconceptions were not cleared up by the paragraph above, so I’ll include the below response I gave elsewhere to the fact that McKean has taken this as an extension of an old personal conflict with a couple of us.  The summary, in case you don’t want to read the long version, is that failing to write something because someone could construe it as a personal attack is just as bad as writing something as a personal attack, and we wrote this as a response to the opinions, not the particular person holding them:

We anticipated this reaction, though, since Laura and I have a history of a very small number of conflicts with Thomas, and since things can be very easily made personal to deflect from the content of the message.

I mentioned it to Laura, and she said, essentially, “If Thomas thinks I even think about him when I’m not reading his writing, he must think I have far more time on my hands and a lot more interest in him than I’ve got.” Same goes for me.

Someone else at autistics.org suggested that we not even mention Thomas in our response for fear that this would be (mistakenly) taken as personal, given Laura’s and my history for him.

We decided to risk that reaction, given that anyone aware of that document (which is far more widely distributed than just those who received it, but those who received it are an enormous number of people in themselves, and far more than one of them have posted it in public places or redistributed it in other ways) could put two and two together, and that tying these opinions to the recent events that prompted their expression made more sense than randomly plonking an editorial up for no apparent reason other than to have one.

People in positions of power are potentially making decisions about every single one of us (not necessarily knowing every single one of us, but if we were to ever try to speak at conferences) based on what was said in that mass email. That’s what, in many people’s eyes, makes it more than the business of just those people in positions of power.

And for the record, several people, including us, published something similar when it was Lenny Schafer trying to say the same things. We would have published something similar whether it was Thomas McKean, Jane Meyerding, Jerry Newport, Parrish Knight, or Frank Klein who did that!

We just had the misfortune to have it be someone where it could be easily misconstrued as being tied to past conflicts for half of the people involved in writing our response. And it should not be forgotten that the response was written with input from four people, not two people dragging the other two by the ear, and signed by upwards of twenty by now, many of whom weren’t around for the conflict six years ago, some of whom were as critical as anyone of the way autistics.org handled that conflict (which, by the way, I think about only a tiny fraction as often as I think about Thomas, which isn’t very often to begin with).

But failing to write something because it could have been (and probably would be) construed as a personal attack, would have been just as wrong as writing something as a personal attack. We did neither, we wrote a response to what was said.

So at any rate, even if you totally erase the words “Thomas” and “McKean” from the document, the points made in the document still stand, and dredging up old unrelated conflicts to divert attention from that fact is pointless and I’m not going to engage in it. I just wanted to clarify what’s up here before people’s imaginations get too far out of hand.

So, our response stands, regardless of who happened to write the thing we’re responding to.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

47 responses »

  1. This is very unfortunate news, and it means that the thinking that leads to exclusionism and elitism and segregation is ingrained in our (someone fill in the blank for me because I thought of human nature but doesn’t that imply that everyone does it? Which isn’t true, not everyone thinks this way.) I’m going to sign that editorial.

    AI

  2. Let me quote Jim Sinclair, from the History of ANI article:

    These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity. Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves. He also expressed frustration with white abolitionists’ demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: “Give us the facts, we will take care of the philosophy.” Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.

  3. I’m an editor with The Blog Reader, a new website that posts interview-based features about compelling blogs and bloggers. We’d love to feature your blog, and I was wondering if we could set up a phone interview at your convenience? I’ll look forward to hearing from you.

  4. Yeah, to continue the LGBT parallels – in a lesbian newspaper I was involved in, we defined “lesbian” as “anyone who says she is one.” Not much argument about that. Until someone didn’t like someone else’s opinions, and all of a sudden “she isn’t a real lesbian.” Sigh. That was a pretty awful time.

    So I signed the autistics.org editorial. This is so crappy.

  5. Ballastexistenz, what is your take on people who have been given a label of autism by a professional, but who do not view themselves as autistic? Are they also who they say they are? Or are they in denial, lacking insight, confused, delusional, atypical, having comorbids etc?
    Is self-undiagnosis OK too?

  6. Just curious

    Anybody asked Tom what (or who)motivated him to write this? I’d be surprised if Schafer et al didn’t jump on it to ‘disprove’ the blatherings of the folks who think that the mercury mafia are really weird and so on. Has anybody who knows him pointed out to him the logical consequences of this letter?

  7. The problem Mr. Mckean is speaking about is not a requirement of credentials per se i.e. show me your medical records before you can speak, it is more an issue of who is speaking and who is not speaking and people speaking about things they are not qualified to speak about.

    THe original core group (Grandin, Williams, Sinclair, Mckean, Barron Grant, etc) all had a common background, a common shared reality, an understanding of all aspects of the spectrum, i.e. early education and school placement issues, institutionalization, non-verbality, all the symptomology that is the autistic spectrum, understanding of not just there autism but other people’s autism.

    Who is speaking now and for whom are they speaking for, and what is their motivation and shared reality, or is it just another book sale on the autistic lecture circuit ?????

  8. tinted: Yes, deciding that you’re not autistic even if a professional has called you that is totally fine. The point is that professionals aren’t the ones with the final authority over who or what we are.

    Donna: Even if all those things you say about the initial speakers were true (and I do not believe that those things were or are true, particularly the common shared reality and understanding of the whole spectrum) it would not justify what McKean is asking. It would not justify invading the privacy of and/or partially or fully discrediting the opinions of the young, the late-diagnosed, the self-diagnosed, and those who quite frankly don’t have or need all of those traits. Especially when parents and professionals are not held to the same standards, especially when he uses less popular opinions to justify this when the only conference speaker known to have falsified this information has a popular opinion, etc.

    People have always spoken with varied motivations, and for varied people, from the beginning, however romanticized that beginning has become in hindsight. I have seen records of arguments from that time period over these same issues by these same people — I recall several of the people you named, among others, publicly doubting each other’s autistic status, demanding credentials, talking of the “danger” of said people presenting about autism because their experiences differed so much. Diagnostic inquisitions and subtle and not-so-subtle discrediting of each other’s diagnoses would not have solved these differences of opinion back then when there were fewer presenters and will not solve them now when there are many.

  9. Alyric (and Amanda and Joel and everyone else)… I just want to point out to Alyric that this article was posted in PRIVATE EMAIL and that copyright and privacy laws are being violated by posting it in public. Normally I wouldn’t mind because even though this is taken out of context and turned into something it isn’t, everyone does have a right to their opinion. However, when it goes so far as to have people making petitions against me, yeah I get a bit miffed. So yes, I am taking legal action to have this REMOVED, as is my right. What autistics.org is doing is not only legally wrong, but morally wrong as well. This article was NEVER posted in public and autistics.org has NO RIGHT to post it in public without my permission. I am the author and like every author, I have a right to protect my work. Take it down or face the consequences.

  10. As I mentioned elsewhere (hasn’t made it past moderation yet), this is not a petition against you, it’s a petition (actually that’s your word, not ours, it’s an editorial that we’ve allowed others to sign, I’m a bit echolalic that way) against a belief you have espoused to a lot of people in positions of leadership in autism organizations with apparent intent to change their actions towards autistic people.

    “autistics.org” never posted it in public. One person did (actually more than one, but one from here), acting as far as I know independently of autistics.org, because I certainly wasn’t notified until after the other three of us had started making plans to respond to it, based on forwards and postings in totally different places by totally different people.

    We’ve responded to the points of view presented there, and we would have responded to those points of view no matter who was putting them forth, especially in the manner you did put them forth.

    The two of us who have history with you don’t think about you unless we’re reading stuff of yours. We knew you might take it personally, but we had to take that chance, it being just as wrong to avoid saying something because of a personal conflict in the past, as to say something because of a personal conflict in the past. Avoiding your name entirely was considered but rejected for that reason.

    We, all four of us, said something, because of our convictions on the matter, not because of past conflicts. Others signed it because of their personal convictions on the matter, even if they agree with you in other areas (in fact the person who reposted it, to my knowledge, actually likes a lot of what you have to say) and disagree with autistics.org in other areas (some of the people signing have had their own conflicts with some of us in the past). What we said is opinion, not personality, in response to opinion, not personality, and that is what I tried to make clear in my post above.

    And, as I’ve said, our opinion stands regardless of who you are.  Remove “Thomas” and “McKean” from it and our opinion would be the same, but given that it was a Thomas McKean who wrote what we’re responding to, that name remains.

  11. Diagnostic inquisitions and subtle and not-so-subtle discrediting of each other’s diagnoses would not have solved these differences of opinion back then when there were fewer presenters and will not solve them now when there are many.

    Not sure where you are getting *many*. Take ASA and their yearly convention for example. One can only come to the conclusion that their are only a handful of autistics that can present at their yearly convention because its the same autistics year after year after year. The other disturbing image coming from the ASA is that autistics with college degrees can only be keynote speakers or sole presenters. Got to at least give the ASA a point that an autistic on a panel doesn’t require a college degree to have input on what it is to be autistic.

    The bottom line is all the autism organizations presume that every autistic has reading and writing skills when they send out their *call for proposals* online. How many dxed autistics can’t read or write to find these submissions online? How can you communicate a desire to share your thoughts when the medium doesn’t recognize learning disabilites from autism so many have?

    PS. I am familiar with the MAAP achive and that period of which you are referring too.

  12. There’s a lot more than a few people presenting at autism conferences these days. I’m talking about conferences besides just the ASA national or ASA at all, since it was not just ASA national or even ASA people the original email went out to. It went to many local leaders as well as leaders in organizations that are not ASA-affiliated. Some of those have already started thinking about policy changes on the basis of the letter, requiring official diagnoses in order for someone to claim to be autistic.

    There is a lot disturbing about who the ASA allows to present at their national conferences, and a lot disturbing about who gets access to that stuff. That isn’t, though, what we were responding to in the stuff Tom was writing, which was about people presenting who possibly according to him shouldn’t be. Not the other way around.

    The MAAP archive, which I have read, is only a fragment of what I’m referring to in the old stuff. But this conversation seems to be a large amount tangent and a small amount main point. The point of the editorial was not to go into the entire history of autistic speakers, nor to go into the entire history of everything the ASA does wrong (and they do a lot wrong, as do many of the other organizations, as well as many autistics, but that’s not the topic this was about).  You’ll note that in other places I do discuss the problems inherent in assuming all auties can read and use language and so forth.

  13. Note for Mr. McKean: I saw your comments published in another location; the person who posted them said that you had sent this email out to so many people that it could be considered very properly to be public.

    As to the substance: this position makes the medical professionals the gatekeepers of both who can speak for autistic people and what can be said by/about them. Whereas it should be autistics and only autistics who speak for autistics.

    I am self diagnosed. Discovering this fact when I’m in my mid forties, and having long ago figured out the survival strategies I need–and, be it admitted, having always been able to assume a veneer of normalcy when needed, unlike a lot of other people on the spectrum–I have no pressing reason to get a DX. But I know, to my own satistfaction that I’m autistic–I fit the classic Asperger’s profile so well it’s almost a parody (Just substitute ships for trains). But even if I am wrong, my experiences are so similar to those who are autistic that sharing them, and sharing my opinions, can not be anything other than helpful to people who are confirmed to be on the spectrum.

  14. Ballastexistenz: as for the requiring official dx to be able to present, I hope that letter doesn’t cause that to happen. I have another question: what information is there about autism and identity issue? I’ve been “bred” into socializing and I must say I like it at least 75% of the time….going out to big gatherings of relatives…but I notice that I go out far, far less, when I’m at school, and I feel like I live two lives. Have you or anyone else here ever felt that way before? I would love to read what you have to say on this.

    AI

  15. Re identity I think that split feeling is common for autistic people who pass, but also to anyone forced to live a large amount of their life passing as something they are not. (Sorry for not long reply, typing is one handed and slower today.)

  16. My thanks to Joel for taking down the article. It has been posted on my own site with more from me, to clarify my position on this issue because people are somehow thinking I said things I did not say. Again, thanks for removing the article. :)

  17. Question: My son has 3 seperate diagnosis from 3 seperate major universities. Does that mean that my son’s official diagnosis would be more legitimate than someone who only has one? Would that mean he is a more “real” and quailified autistic than Mr. McKean if he only has one. Isn’t that where his logic could lead us to?

  18. follow the link that used to have it on joels blog and it links there.

    go to michelle dawson’s board for my brief commentary (may be longer later).

    apologies again have one bad hand and one worse hand today.

  19. Sorry your hand hurts and you can take a few days in replying to rest that hand.

    I was just at Autistics.org and read the petition.

    Filler–

    My daughter was dxed moderately autistic at 3 years 11 months by a developmental/behavioral doctor with outside evaluations by ST, SLP, OT’s etc. The school district also did an evaluation by the child study team. Once again, about 8 1/2 months later (thru our insurance we went for a 2nd opinion) and another beh/dev doctor dxed our girly girl as moderately autistic.

    There is absolutely nothing wrong with being dxed autistic and my daughter is in very, very, very fine company indeed with 1.5 million other autistic people who have been *dxed* *autistic*. I will never ever sign a petition that wants me to teach my daughter that there is shame in being dxed autistic.

    Because my daughter’s dxes she goes to a state of the art *autistic* school where the people who built the school actually had read Chapter 2 of Targeting Autism by Shirley Cohen and the voices of some very fine indeed autistic people were heard and acknowledged.

    Because my daughter was dxed autistic she is learning and growing and thriving. This year she learned Handwriting without tears and boy is she happy to be writing words, words, words.

    To sign the petition at autistic’s.org is to go back to the previous century.

    It’s the 21st Century. It is called *Autistic*! No shame indeed.

    Donna

  20. Now I am (after resting hands, trying typing again) simply confused.

    There is no shame in being diagnosed as autistic at all. All four of the people who wrote the editorial have an official autism diagnosis of one kind or another (ranging in age of diagnosis from early childhood to middle age), although for one of us it was so long ago that the records have been destroyed.

    The reason that we will not hand out our medical papers is not that we are ashamed. We are not ashamed to be autistic and we frequently tell people that we are autistic, even that we are diagnosed autistic.

    The reason we do not want to do this is because it is wrong to judge how authentically autistic a person is by whether they are able to give out an official diagnosis or not.

    If we were to hand people our diagnostic papers when asked to “prove” we are autistic in order to engage in public speaking about autism. In a venue where a person without diagnostic papers would be turned away and told they had no right to call themselves autistic in that venue. Then we would be in a way, saying, “Yes, it is right to let us in but not others who are just as autistic as we are.”

    This has nothing to do with getting services, or whether a person can use a diagnosis to get services. This has nothing to do with shame. None of us are ashamed to be autistic or to get a diagnosis. We simply do not want to participate in actions that reinforce the idea that showing a formal diagnosis to conference organizers should be required in order to speak publicly about autism.

    It is amazing to me how many different issues you bring up that have nothing to do with what I wrote, and how passionately you argue those issues, as if we disagree with you on them, as if you almost want to argue even if there’s nothing to argue about. I don’t know if that’s going on or not, but it’s pretty strange watching the things you’re coming up with.

    I have papers that say I am autistic. (I also have papers referring to me as “low functioning” and papers showing adaptive skill scores that go below the floor of the tests in some areas.) I use those papers to get services and equipment, including the equipment that allows me to communicate. I do not use them to prove to conferences that I have a right to speak publicly as an autistic person. I am autistic and I would have just as much right to speak on autism if I did not have all the nice shiny paperwork that I have.

    If anyone asks me to produce diagnostic papers to prove that I am autistic in order to speak at a conference as autistic, I will refuse.  I will refer them to the editorial.  And I will tell them that I do this because of the unfairness to people who cannot or will not do the same, as well as the double standards in the autism world whereby parents and professionals are not held to the same standards of proof as autistic people are. Where is the shame in that?

  21. It is entirely ridiculous to suggest that those with autism must “prove” that beyond a resonable doubt to be allowed to “speak”. It is so insulting and outrageous especially because of the blatent double standard. Why aren’t those advocating for this DEMANDING that everyone who speaks at a conference undergo some sort of medical/psychological examination then. Of course that would be upsurd to request something like that of the “normals”. (They run big organizations and don’t need to prove anything.)

    And my son also has several diagnosis of autism – from a neuro-psychiatrist, pediatric neurologist and child psychiatrist. Was I ashamed by the autism diagnosis that I insisted on having different medical professionals review this diagnosis and see if they concurred? Not at all – my real reason was because I had been diagnosed with OCD, sensory issues and dysthymia (from childhood – like sensory stuff as a baby). So I was confused as to why they were calling this autism instead now. But at least my son can produce his “papers” (sounds very Nazi era) in order to get permission to speak.

  22. It is amazing to me how many different issues you bring up that have nothing to do with what I wrote, and how passionately you argue those issues, as if we disagree with you on them,

    Let’s tie it all up. (Using that battleship called the ASA!)

    Same ole sole presenters or keynote speakers with college degree requirements over and over year after year. Same presenters selling something whether it be Vitamin B or a book, selling, selling, selling at the market that is called the ASA National Convention.

    I posted on your blog about the many *dxed* autistics with learning disabilities who don’t have the skills to be online to reply to a *call for proposal* and hence shut out of the medium that is called AUTISM Society of America.

    Perhaps that old battleship needs to do some reading….reading over and over, one autistic dxes after another, over and over and over and over the learning disabilities spelled out in simple english and is associated with so many who are dxed autistic.

    Not being able to read or write online does not mean you have nothing to say about being autistic at a conference!

    Not having a college degree doesn’t mean you have nothing to say about being autistic at a conference.

    Not being an author of a book doesn’t mean you have nothing to say about being autistic.

    I think it would be a good idea if the ASA read what an autism *dxes* means!

  23. There’s also the fact that even if those of us with “papers” did produce them, what’s to say that we wouldn’t be accused of forging them? Would the accusers need personal confirmation from the doctors we’d seen? Would the “certificate of diagnosis” need to be stamped with some sort of official seal?

    In this age of Photoshop and diploma mills, how much good is a piece of paper anyway?

  24. I am married to a man dxed with Asperger’s Syndrome. I wish he was a proud autistic. He denies his diagnosis even to me who was sitting beside him when he was told by an expert that he is autistic. I have told him there is nothing to be ashamed of and that autism is simply a different way of being in the world. He does not buy it.

    I thought the response from Joseph with a comparison to the situation abolitions faced years ago was really interesting. I have a friend who is involved in native spirituality. She is not native yet she knows some of several native languages and more about first nation culture than many born to it and she is facing the same dilemma. Native elders demanding people produce proof of native ancestry before they are allowed to speak at pow wows or teach native arts.

    Having said that I am also dubious of the endless self dxed autistics. Despite the predjudice against persons with disabilities it has become almost trendy to be Asperger’s or autistic. I’m not convinced that everyone who says they are autistic are in fact autistic. Then there is my husband who is autistic and says he’s not.

    Just my two cents.

  25. Thomas – on the off chance you return here to read this, I’d like to say that I’ve read both your email and your subsequent web page.

    I personally find the idea that speaking privately and speaking publicly can entitle one to two differing viewpoints is verging on the dishonest. You may well say that you never meant for the original email to be made public. I can believe that as it is ill-judged, erroneous, assumptive and incendiary to say the least. However, I’m a strong believer is personal responsibility. If you said something, I can only assume you meant it as you wrote it. Why would you do otherwise?

    Your remarks on the ‘snobbery’ of people who do not wish a cure and your attitude towards the education of parents like myself are nothing short of incredible. In short, your original email reads to me like someone who wishes he had the same level of attention he used to have a few years ago. I don’t know if you are a parent or not but, as a parent of what you would not doubt call a low functioning child, what parents need to hear is that their kids have value. It seems they won’t get that message from you.

    Personally, I’m extremely glad that you are no longer active on the speaker circuit.

  26. Donna:

    So, in other words, because some diagnosed autistic people (just like some undiagnosed ones) can’t get on the net or can’t read or aren’t selling anything or aren’t college-educated and are shut out by the ASA, it’s wrong to take a stand on the potential shutting out of undiagnosed autistic people? (A stand that another post of yours claimed was about being ashamed of being diagnosed. You seem to think of things in terms of zero sum games a lot, where standing up for the undiagnosed somehow hurts the diagnosed and so forth, which it does not.)

    Or, are you commenting on an issue totally separate from the one we’re talking about here? Because I’ve spoken out on many occasions, including in a radio interview (although it was edited out), about the exclusion of autistics without net access or ability to read or write or any number of other things, I don’t need to be persuaded into that and you might be better off trying to persuade someone who actually believes it doesn’t happen or is okay.

    Much of our conversation reminds me of someone using an argumentative tone to tell me something I already know or believe in, and acting like I’ve said something that contradicts it.  It’s a very strange experience.

  27. Aargh… sorry to require so much spelling-out… Michelle Dawson’s board? All I know is No Autistics Allowed, which doesn’t look like what you’re referring to.

    Thanks for your patience!

  28. Bingo!

    Yup won’t sign it.

    Proudly stand behind the 1.5 million *officially* *dxed* *autistic* people.

    Perhaps if the many *autism organizations* would let these 1.5 million people present on what it is to be *autistic*, maybe the many mis-dxed *MRers* etc would finally know *Hey I’m Autistic* and there is *Nothing to be ashamed of* and there are 1.5 million people just like who have similiar experiences and symptomology–It’s cool!

    And of the 7 million adults dxed in the U.S.A. of which IMHO maybe 3-4 million are autistic, maybe the system and the autism organizations could use some of their profile, muscle, whatever, to get these people a correct dxes so the supports and services they need to live more independenttly etc…

    Hiding a dxes admits shame and for exactly how many are we talking *self-dxed aspies/auties*????

    I am more concerned about the *official mis-dxed” people and the people who can I borrow that phrase that everybody seems to use on the internet *the real voice of autism* but you won’t find them at the conferences.

    PS Hope your arms feel better and a

    ************Standing Ovation*************

    for

    GTTO! Well written and long overdue!

    PSS I do agree with much on your blog too! = )

  29. Well in refusing to sign it you’re clearly not standing behind the officially dxed people who wrote it. Strange, that.

    The undiagnosed people you talk about would also count as having late diagnoses, someone else the editorial is written for, considering that McKean referred to such people as “suspect”. Not even everyone with an early childhood diagnosis has access to their diagnostic papers, so that’s even more people it’s written for that you claim to support. It is also potentially dangerous for some people to show papers like that to an organization.

    We don’t hide that we’re diagnosed. We simply refuse to hand over our papers, refuse to play a game that disenfranchises people. There is no shame here and repeating the strange idea that there is won’t make it any more true. Repeating that this is essentially a zero-sum game won’t make it any more true either.

    Are you prepared to submit to DNA testing and a background check before speaking about your child? Prepared to make all other parents do the same? Submit to the same standards you are insisting on for the rest of us?

    No autistic person is more “the real voice of autism” than any other. There are many real voices of autism and you do not have to insist on denigrating or disenfranchising some, to empower others. I repeat, this is not a zero-sum game, and I utterly refuse to follow your ideas and disenfranchise those who won’t or can’t hand over their papers, just as I refuse to follow the ideas of people who think only the so-called high-functioning should have a political voice. It’s not a choice between one and the other, you know, and I choose to support neither side in order to support every kind of autistic person (which is not to say agree with every single autistic person, because I don’t).

    You’re not going to get me to abandon the self-diagnosed or the unable to hand out papers, any more than anyone else will get me to abandon people who can’t read or write. So thanks for the compliment but I’m still not going to participate in the destructive split you encourage every bit as much as aspie-supremacists do. To show people the full range of what autistic means, isn’t it a better idea to avoid medical tyranny and double standards rather than encourage them?

  30. I am not 100% positive if i am autistic or not. I have been pretty sure I am (with varying degrees of this mattering in my daily life or not) for about 10 years. It has explained a lot of things in my life. I am not ashamed to be “weird”, “nerdy”, “geeky”, or “autistic”, although there are people I would think twice about telling them about AS, when I am not sure i can explain everything in such a way that they won’t get the wrong idea.
    But I wonder if I am qualified give advice to someone on practical issues such as “how to make a classroom comfortable for autistic/AS children” for example, when I don’t know if which of the aspects of what I like and what bothers me are “spectrum-related” and which are “just me”.
    And on this site and on other sites I have gotten the idea that it’s probably impossible to separate the autistic part of you from the other parts… and I would agree with that, I mean, it makes sense.
    I wouldn’t want to speak at a conference, ever. So maybe this is a silly thing to worry about.
    But if someone asks me “what is Autism really like?” I will tell them some things from my life and some things from the lives of people I have met online and in real life, but when I tell the things from my life, I am not completely sure whether I am answering from inside or from outside… and I almost wonder am I prentending in some way?! On the other hand sometimes I am so strange, or normal ways are so strange to me…
    I don’t even know if i can sign your petition, although i agree with the main idea in it.

  31. Proudly stand behind the 1.5 million *officially* *dxed* *autistic* people.

    That number is not correct, and this is important as I’ll explain. The population of the U.S. is 240 million. So if 60 out of 10,000 persons (of every age and across the entire spectrum) were diagnosed, then yes, there would be 1.4 million officially diagnosed autistic people in the U.S. The reality is that there are 1.4 million autistic people in the U.S. but only a fraction are diagnosed, maybe 0.5 million. In fact, the rate of diagnosis is much greater in the younger cohorts. This begs an important issue. Clearly it’s arithmetically impossible to expect most autistic adults to be diagnosed. (I can show you some evidence of a high prevalence in adults, despite lack of diagnosis, if required).

    As a side note, I do happen to have what I consider a formal diagnosis (i.e. my son’s psychiatrist says I’m an Asperger autistic). And my son is a non-verbal autistic boy, with an official diagnosis.

  32. I will never ever sign a petition that wants me to teach my daughter that there is shame in being dxed autistic.

    I think I’m not alone when I say that this is a silly interpretation of that petition.

  33. Is there even any real reason to suspect autistic impostors exist? (Well, I know of that one case of a curebie autistic who pretended to be a different type of autistic, but proof of diagnosis is not being demanded of curebie autistics, strangely enough). If this were known to be a common phenomenon, i.e. NTs pretending to be autistic, then I’d see the problem. At the moment it all sounds like trying to fix a problem that perhaps doesn’t even exist, and in the process undermining the credibility of individuals with a particular type of opinion.

    BTW, I’ll ask my wife where my son’s papers are. I think I’ll put them in a lock box. He could very well need them in adulthood to prove his identity it appears.

  34. Accurancy is one thing, but all this concern over labels and official diagnosis does not make sense to me unless there is supposed to be some sort of “disorder” pecking order that I am not aware of. They all have stereotypes whether it is a diagnosis of autism, mental illness or MR and many people have concurrent conditions. After the nuances of Aspergers and HFA were brought to my attention after my son was diagnosed, I could see that some diagnosed with OCD (with rigid thinking, rituals, from childhood) were on the autism spectrum also and perhaps at least not pure OCD. But really what difference does having an official label on the autism spectrum from a “professional” make. It would not make a person more legitamate in the autism community from those who do not agree with them anyway. Their diagnosis would be dismissed or disputed – it is happening already. The big concern about shifting the labels around or getting the “official” autism hand stamp to me indicates “shame” over other conditions – whether it be mental illness or MR.

  35. I’ve run into a tiny number of impostors but mainly that was people who had an ulterior motive: Getting into an autie-only group when they were really an NT parent or something, being a reporter, preying on people (to the person who wrote to me about that: I don’t mean you!), etc. I haven’t heard of more than just that one giving lectures (and you can’t really make much of a living that way so I don’t see the appeal).

    There’s probably non-autistic people who think they’re autistic. I know for a fact a lot of autistic people think they’re non-autistic, so that potential for error goes both ways. I don’t think it’s worth silencing unconventionally-diagnosed people over at conferences though.

    I know a lot of late-diagnosed and self-identified auties who went through all kinds of crap before learning about autism. Some even after, like my friend who’s been denied life-sustaining autism services largely because of age at diagnosis and faulty stereotypes. I don’t want them shut out of discussions of autism because their survival is at stake too.

  36. Forgot to mention, I have the stuff that would by medical people called Tourette and OCD. Have since I was a kid including highly elaborate rituals followed from irrational terror. Never got diagnosed. Even when I ticced up a storm in some institutions and stuff it was taken as other things, punished, seen as attention seeking all through special ed, and is these days confused with the autie mannerisms I have. I don’t need a medical professional though to tell me that I have motor and vocal tics and that I have what are considered by psychiatry to be called obsessions and compulsions including some quite stereotypical ones.

    Lacking a doctor’s diagnosis does not mean I twitch any less than diagnosed Touretters. And getting a diagnosis would be possibly dangerous, I am deathly allergic to what is used to ‘treat’ tics, plus it gives me more tics and compulsions not less. But I would expect another Touretter would not need a diagnosis to understand that I tic. Of course, Touretters have far more voice in the Tourette community than auties have in the autistic community… urgh.

  37. It occurs to me that a non-autistic imposter might have an easier job of getting a diagnosis than many autistics, especially those who’ve grown up having to play down their autistic characteristics for safety’s sake. Shrinks go far more by stereotypes and prejudices than those who consider them Authorities realise; and real people rarely fit stereotypes. But a half-competent imposter could play a stereotype.

  38. Shrinks go far more by stereotypes and prejudices than those who consider them Authorities realise; and real people rarely fit stereotypes.

    This is very, very true. After a recent experience with psychiatry I am more convinced than ever that the psych industry doesn’t really know much in the way of accurate information about the autism spectrum at all. Which is sad, bizarre (considering that medicine is supposed to be based on science!), and dangerous.

  39. Pingback: Autism Vox » What does autism look like?

  40. Zilari:
    The short post you wrote, goes to show that NO ONE, or more accurately, NO TYPE OF PROFESSION is TOTALLY immune to stereotypical thinking. That means, that there will be SOME people in any field (you mention psychiatry. There are more in this field as I believe you are pointing out). The study of the mind (Psychiatry)is not precise science, like chemistry or physics, and these stereotypes are things that people can really wrap their minds around, (they’re concrete, precise-note that doesn’t mean correct, necessarily, examples of some abstract ideas. Or, what psychiatrists think are abstract. I’ve succeeded in confusing myself now, but does anyone think this makes sense? I know what I want to say but I can’t put better words to it.
    Baba Yaga: “especially those who’ve grown up having to play down their autistic characteristics for safety’s sake.” by typing that, you’ve put words to an idea that I have had for a while now. Much respect and many thanks. I’ve been playing a much watered-down autistic (and therefore diagnosed Aspie) character I created, for ages now. For the reason I have copied above. That character (Athena) is half of me. The other half (Ivan; I’m female so the half the world sees had to be the “higher functioning” for lack of better expression, female character….the other half is just as equally me. I never act as half though, at least I try not to. I try to make the world believe I am a seamless whole. Because otherwise, I would have no inner fortress untouched by the world, nothing to retreat into. I’ll explain more of this story later. I’m glad to find a place where I can tell the truth about myself. Anyone else have this sort of, living life as a character most of the time, experience?

    ai

  41. “But I know, to my own satistfaction that I’m autistic–I fit the classic Asperger’s profile so well it’s almost a parody (Just substitute ships for trains). But even if I am wrong, my experiences are so similar to those who are autistic that sharing them, and sharing my opinions, can not be anything other than helpful to people who are confirmed to be on the spectrum.”

    I’m officially diagnosed and atypical (the best description to quickly sum up is “between Asperger’s and demand avoidance syndrome”) but I know what you mean. I got told that what I said on an Angelman Syndrome list was “irrelevant” because I don’t have an Angelman child and autism isn’t Angelman Syndrome. Meanwhile I was a) stating clearly that I’m autistic and therefore my experience is not the same as an Angelman Syndrome person’s, and b) describing mostly those things that had a higher chance of being similar, such as sensory issues (present in Angelman Syndrome as well). What’s strange is that when I actually posted most of those posts I was thanked for my input. It was only after I expressed an unpopular opinion (not wanting to cure Angelman Syndrome) that they started claiming my posts were irrelevant.

    “I personally find the idea that speaking privately and speaking publicly can entitle one to two differing viewpoints is verging on the dishonest. You may well say that you never meant for the original email to be made public. I can believe that as it is ill-judged, erroneous, assumptive and incendiary to say the least. However, I’m a strong believer is personal responsibility. If you said something, I can only assume you meant it as you wrote it. Why would you do otherwise?”

  42. Ettina wrote: It was only after I expressed an unpopular opinion (not wanting to cure Angelman Syndrome) that they started claiming my posts were irrelevant.

    My viewpoint about how to handle sensory overloads (because I have personal experience with what works for me) was dismissed on a parent group because it went against their common sense thinking of forcing the child to stay in the overloading situation. Apparently you “cure” sensory overloads by increasing the exposure. When I suggested pretty much the opposite – looking for clues that your child is starting to get overloaded and leave the area and find a quiet place to regroup – it was dismissed as teaching the child to be avoidant (lol). It was funny though when a well respected therapist on the group told them that what I was suggesting was right on.

  43. Zilari: I am more convinced than ever that the psych industry doesn’t really know much in the way of accurate information about the autism spectrum at all.

    That doesn’t surprise me at all. In point of fact, I think the majority of psych types know very little that’s meaningful about a lot of the things they’re supposed to ‘treat’. And seeing everything in terms of symptoms and pathology, how can they? I don’t think I ever had a shrink interested in what I could do.

    Athena Ivan: I follow. (A bit too well for comfort.)

  44. LB, what you said about overload makes perfect sense! I am NT but I have an issuse with sensory overload, maybe more NTs do that will admit to it. The first thing I do when I am overloaded is to escape. If I was forced to stay in the overload situation I would feel anxios, angry and desperate. Fortunately I can walk and find my way around so I can leave voluntarily. How on earth could it help an autistic kid who would experience a hundred times the overload I get to be forced to stay in the situation. Why not just call it torture and be done with it.

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