Autism Vox

86 opinions for A Sad Story on Father’s Day: The Wright Family Feud

• Estee
  Jun 18, 2007 at 12:42 pm

  I agree on your last wish completely.

• Kristina Chew, PhD
  Jun 18, 2007 at 2:39 pm

  Your use of the word “implosion” to refer to all this was well chosen!

• Two Autistic Children
  Jun 18, 2007 at 9:45 pm

  […] has been focused on the woes of three relatives of an autistic child, 5-year-old Christian—-Bob, Suzanne and Katie Wright—-there are two autistic individuals I have been thinking of, and with much sadness and worry […]

• jon shestack
  Jun 19, 2007 at 5:51 am

  I write first as the father of Dov, a 15 year old boy who is very challenged by autism., Secondly as the founder of Cure Autism Now and finally as a board member of Autism Speaks..

  I was moved when I read Katie Wrights letter on the NAS website. I thought it was brave, and thoughtful and courteous. And because there has been so much strife in our community and I have felt so heartsick about it, her letter moved me to share some thoughts—

  Katie Wright is a devoted mom with a very sick child, and she is looking high and low for something that will help him.

  Bob and Suzanne Wright are loving parents and grandparents dealing with a double shot of grief, one for their daughter and one for their grandson. They, too, are looking as hard as they are able for something to help him.

  And so am I. The search for answers is what prompted me to start Cure Autism Now.
  And though we haven’t found the answers yet, the one thing I am pretty sure about is that we won’t find them any faster by insisting that everyone search in exactly the same place.

  Whether we try to heal autism with environmental research, genetic research,
  prayer books, Phds , double blind studies, or business plans written by consulting firms, aren’t we all honest, brave, sad and good? Don’t we all love the autistic people in our lives for who they are, and don’t we all also want more for them?

  Is there a family that hasn’t had a fight? Aren’t we all just so frantic sometimes as we desperately search for ways to help our children? Don’t even the best of us sometimes get angry and cast blame? Here’s is just the briefest sampling of my family dialogue , tell me if it doesn’t sound familiar:” If only we’d started ABA earlier,… We should have done floortime….We can’t vaccinate the others…Are you kidding? They won’t let them into school… I want to go gluten free….I’m just grateful he’s eating anything even if it is 100 grilled cheese sandwiches…. No wonder he’s autistic, your family is crazy…. Mine? No you must be mistaken, you are a nut, and your nutty family is definitely nuttier… have you talked to your father lately…No?…my point exactly…”

  And yet, what do we agree about in our family? We agree that Dov deserves our love, our respect, our commitment, our hope and our hard work, We believe that he is counting on us to help him. Dov who can only communicate by painstakingly slow typing, knows he is autistic and he has told us many times that he doesn’t like it. And so our family will put aside our squabbles as best we can and keep on working.

  To the activists, bloggers and the journalists I want to beg for just a little mercy and restraint. Let us make our own best arguments on the merits rather than use this one family as our proxies.

  There are so many things we need to fight for together,.We need more research, more trained therapists, we need Medicaid waivers, IDEA funding, the kids in the neighborhood to be more kind and less cruel. We don’t really need hate mail and editorials that make us out to be idiots. The last thing we need to is fight against each other. There are real enemies out there. There is a disorder that is crippling a generation and there is a government that takes very little interest. If I have learned anything in ten years of lobbying it is that the feds love it when we are factionalized and fighting amongst ourselves.It buys them one more year when they don’t have to do anything.

  To Katie, I’d like to say thank you. Your letter was strong and kind. You have been brave. I’m glad you are in the fight, I hope you stay in it., We need many voices.

  I agree with you urgency is still so very important. I have been working to find treatment and a cure for autism for 14 years and I am NOT doing it for the next generation. I am doing it for this generation.

  To the board and supporters of Autism Speaks, if some of our critics are right, and urgency isn’t a big enough part of our vision, then we need to change. The same with treatment. Even while the larger answers to larger questions may take more time, people with autism can have a better quality of life today and we must help that happen.

  If we are not seeking out new ideas and fresh talent, then we must change. If innovation is somehow perceived as the enemy of excellence, then we must change. If we don’t deeply understand that in order to lead we must serve, than we must change.

  I think we haven’t gotten it totally right yet at Autism Speaks. But we are new and we trying really hard .We are trying to integrate a couple of strong, proud organizations, we are trying to move fast, and occasionally, we stumble. I hope we recognize that we can learn and improve.

  We will have faith, but we will earn our miracles We will use our hearts and our minds to grab them from the dreamy future and bring them here today. We will find the best scientists and encourage them to use all their wisdom ,art and discernment to treat and to cure autism. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied, we will question authority, despise complacency and above all love our children—for that is the obligation without end whose reward is also without end.

  in peace,
  jon shestack

• Suzanne
  Jun 19, 2007 at 9:26 am

  Aren’t we all just so frantic sometimes as we desperately search for ways to help our children?
  nope. frantic and desperate do not describe how I (personally) search for ways to help my children. They are developmentally delayed. Slow and steady is how we do it.

• Julie
  Jun 19, 2007 at 10:07 am

  Suzanne,
  That was nicely said I totally agree slow and steady. Rebekahs successes are determined by her slow but contiually progess towards her goals not on some standard timetable and we are okay with that.

• culvercitycynic
  Jun 19, 2007 at 12:23 pm

  “We need more research, more trained therapists, we need Medicaid waivers, IDEA funding, the kids in the neighborhood to be more kind and less cruel…”

  … AND, we need, for parents to NOT refer to their lovely autistic children as “empty shells.” Thank-you very much for that Jon Shestack. Will the harm of that statement ever be undone?

• Kev
  Jun 19, 2007 at 2:13 pm

  Jon - remind me - how many autistic people are on the board of Autism Speaks?

• Kassiane
  Jun 19, 2007 at 2:31 pm

  Jon,

  For the KIDS of the world to be more accepting first our PARENTS need to be. No more of this empty shell, toxic waste dump, giggling discussing murder plan BULLSHIT. I’m not broken, your son isn’t empty, throwing names isn’t really going to get much but rolled eyes on this end.

  So when is AutismWeeps going to start listening to autistic adults? Never? Because that’s what it looks like. Your friendly neighborhood childkiller won’t even answer our emails. Charming, eh?

  -Been autistic longer than you knew the word

• Ms Clark
  Jun 19, 2007 at 3:08 pm

  From Jon Shestack’s spam comment (he left the exact same one on mercury mom Ginger’s blog (she sobbed, gushed and thanked him doubly)

  “We can’t vaccinate the others…Are you kidding? They won’t let them into school…”

  How about this Mr. Shestack???

  “We can’t vaccinate the others… Are you out of your minds? Children may DIE!!!! And not just autistic children!!!!”

  You are so phoney it’s pathetic. You led the mercury parents by the nose to get them to sign on to the Combatting Autism Act, and then dumped them like a hot rock and dropped their fave part of the CAA.

  And yeah, as culvercitycynic referred to, when will you try to undo the damage done by calling autistics including your own son, Dov, “empty shells”?

  Feh. Mr. Shestack. Feh.

• jon shestack
  Jun 20, 2007 at 12:43 am

  Ouch, you guys are rough. Once more with feeling for the well spoken, fast typing, neruiverse, high functioning peole with autism. My son would like to be able to talk, to stop stimming, and to worry much much less about continence. I know you don’t like to hear it, but it’s true, I know, because he told me so. I don’t think dov is an empty shell, but he did go off track developmentally and has only slowly, slowly slowly started to get back on track. But enough about that. Clearly we are idiots. I think you should come over assume his guardianship, manage meds, drive to school and therapy, wash him and dress him everyday.
  Would you please. I’m too busy spamming .

• Kristina Chew, PhD
  Jun 20, 2007 at 12:59 am

  Mr. Shestack (and I apologize for not responding earlier in the day to your comment), I have to say, as a parent, I often feel like an idiot when my son is clearly having a difficult moment and I have no idea what to do to help him—-or (worse) when I have tried everything I have learned, and he is still struggling. There are a lot of things I don’t know about Charlie—as what he is thinking—-due to his limited language. I know that not everyone will agree with me about this, but learning about autism from autistic adults’ own accounts has changed my understand of autism and, I hope, helped me to help my son. I see similarities and differences with my son Charlie, even as I see similarities and differences with Charlie and Dov. One thing that always stands out is the sensory experiences, the difficulties with processing sensory stimuli, and the impact this has on behavior—my son seems to hum, warble, babble, sing, pace, jump, etc. in an attempt to “regulate” himself.

  For myself, I have not been comfortable with the notion of “curing” autism. I know that “cure” is in the name of the organization that you and your wife founded; “cure” is very much a “fighting word,” I have learned. Raising Charlie has truly taught me the value and the power and the fragility of words—-I strain to think of how best to use words to describe Charlie, but a lot less than he does just to tell me “Mom, upstairs.” What Charlie most of all needs is not so much healing, or curing, or combatting, as teaching—like any other child, and in ways that always acknowledge him as an individual, and not a “damaged” one, though very different. And then, he can do the telling for himself (not necesarily with words).

• Ms Clark
  Jun 20, 2007 at 1:20 am

  Mr. Shetack, there there, did you get you widdle feewings hurted?

  Cure Autism Now and Autism Speaks get to ride rough shod over autistic adults for more than a decade (of combined riding) and you get to assume the ***wounded*** parent role?

  Guess what Mr. Shestack? I have an autistic child who doesn’t blog, is not interested in such. And probably would be considered midddle functioning. I can assure you my child is more disabled than yours in one area you mentioned.

  You and your wife have described autistic children as kidnapped “empty shells”. That’s a fact. That is a slap to the faces of those of us who have “lower functioning” autistic children. A slap to me and a slap to my child. I see you are not going to move toward a retraction of such a heinous sentiment.

  Your son is a jewel. I’m sure I would enjoy being his mother and not expect any reward or public adoration for that, but would feel filled with the joy of being his mother. My own child is very far from normal and can’t read Hebrew, by the way. Aren’t you the fortunate one? Yes, you are.

• jon shestack
  Jun 20, 2007 at 2:49 am

  Kristina,
  thanks for writing. I understand that autism is an alternate way of being to some, certainly legitimate, but i’m not sure it’s something to aspire to. I think most people with parkinsons would prefer not to have to experience the world that way, the same for those with paralysing anxiety, or those who have intact minds in bodies that do not move. Or my son, perhaps who has an active mind and a body that moves all over the place, but usually not in ways he wants it to.

  Cure has always been a a rallying word for me. It’s a word that is a call to action for so very many people, though I know not all.
  It’s so simplistic for the ND’s to think I want to erase or abort them ex post facto. If we were so lucky as to find good treatments or a cure it would just be another choice, that they might make, since they are fortunate in being able to navigate the world well and make choices.Actually, it’s not really about them. It’s about trying to support and help people who are so much ore vulnerable.

  I will never apologize for Cure Autism Now, it is better than Cure autism once in while when you have the time. It’s better than don’t bother trying to cure it, it’s hopeless.

  Ms Clark, my feelings were not hurt, but I recognize your name and your direct writing style from Amazon and other places.You always seem to be taking a shot at someone or other. I don’t think autism is some kind of competitive sport, but my son ,too, is low functioning. So I guess we have the same amount of credibility.

  My experience as a young father was of having a vital connected little boy, who regressed to the point that there was almost no trace of the personality we had gotten to know. Hence the phrase empty shell.It was a useful turn of phrase and helped communicate our experience to a wider world. As it turns out, that was not correct, and Dov is so much more than that.
  Thank you for pointing out what an ineffective and insensitive jerk I have been.

• Leigh
  Jun 20, 2007 at 3:01 am

  Aren’t we all just so frantic sometimes as we desperately search for ways to help our children? Don’t even the best of us sometimes get angry and cast blame? Here’s is just the briefest sampling of my family dialogue , tell me if it doesn’t sound familiar:” If only we’d started ABA earlier,… We should have done floortime….We can’t vaccinate the others…Are you kidding? They won’t let them into school… I want to go gluten free….I’m just grateful he’s eating anything even if it is 100 grilled cheese sandwiches…. No wonder he’s autistic, your family is crazy…. Mine? No you must be mistaken, you are a nut, and your nutty family is definitely nuttier… have you talked to your father lately…No?…my point exactly…”

  No, Mr. Shestack, these are NOT conversations that take place in our household.

  My husband and I are parents of an 18yr old girl and a 17yr old boy, both with autism….and I don’t mean Aspergers, I mean autism. My son didn’t speak until he was 6yrs old, and neither child has much in the way of expressive language to this day. They are, nonetheless, so far ahead of what I ever dared hope they would be.

  When my children were DX’ed, we were one of only 135 IDENTIFIED families, in the US, with 2 or more autistic children. My how things have changed.

  Frankly, we’re too damn busy trying to maintain a sense of normalcy in our household, and fighting with the school district for services, to argue with each other about who’s to blame for their autism.

  We’re grateful for the additional attention autism receives these days, but are concerned that it has become the ‘Cause de jour’, and anyone who has some vague social disfunction, or processing disorder, is now labeled as Autistic.

  The additional attention, brought about by activists such as yourself, has been a boon to parents who struggle with these unquestionably difficult children. However, with everybody who has been suddenly thrown onto ‘the spectrum’ lately, I fear for the ability of the school systems, social services etc. to handle the crushing cost of supplying anything close to what some of these children need. I have seen services for my own children cut drastically in the last few years.

  For people to argue with their spouses, or a Board of Directors, as to what, or who, causes autism, is stupidity at its finest. For the moment, none of us knows what causes it, nor how to cure it. Rather than petty fights between family members and so called ‘leaders’ in the fight for a cure, shouldn’t y’all spend your time and energy on dealing with the crushing cost of eduicating these children, and let the scientists figure out what caused it?

  Thank you for your attention (presuming you’re able to drag yourself away from your pressing spamming activities;>))

• Ms Clark
  Jun 20, 2007 at 3:38 am

  Mr. Shestack, I am very gratified to know that you admit that “empty shell” was a useful turn of phrase. I’m sure it encouraged many donors to turn lose of cash and throw it in the direction of your organization. I hope to see some kind of public apology to autistic people for the harm the “empty shell” rhetoric that evolved from your families little turn of phrase.

  You are welcome. It has been my pleasure to help you see that you have been insensitive and ineffective in communicating ethical messages about autism. I’ll let Ms. Iversen decide if you are actually a jerk or not. :-)

  Expect straight communication from people who you have actively shunted out of the national discussion of the disorder that affects them ***themselves*** as well as their children. These people are more directly affected by autism you or your wife are, since though you are parents, you are not autistic, from what I can see from here, anyway.

  This is not to say any kind parents have nothing to say, but if anyone can speak to autism with authority, it is the ASD parents of ASD children. Frequently these ASD parent are “higher functioning” of “lower functioning” children. These parents can speak to all kinds of experiences, but these people as well as adults who have been diagnosed as “low functioning” (see: Amanda Baggs) and who know a lot about autism have been shunted off to that side track and an effort has been made to demonize these people and make their words seem worthless.

  How hard have you lobbied for the need of mutliple autism spectrum adults to be sitting on the Interagency Autism Coordinating Committee?? How hard have you and your wife lobbied for the need of autistic adults to have a significant presence in the governing boards of Autism Speaks?

• Ms Clark
  Jun 20, 2007 at 3:45 am

  corrections. I’m gulity of typing too fast, and not editing well enough, obviously. I plea Asperger’s syndrome:

  “I hope to see some kind of public apology to autistic people for the harm done to them by the “empty shell” rhetoric that evolved from your families little turn of phrase.”

  “These people are more directly affected by autism than you or your wife are, since, though you are parents, you are not autistic, from what I can see from here, anyway.

  This is not to say that there are some kinds of parents who have nothing worthwhile to say, but if anyone can speak to autism with authority, it is the ASD parents of ASD children. Frequently, though not always, these ASD parents are ‘higher functioning’ people with “lower functioning” children.”

• Kev
  Jun 20, 2007 at 4:06 am

  Jon, once more, as you seem to have ‘overlooked’ the question - how many autistic people are on the board of Autism Speaks?

  Further, if the answer is ‘none’ by what right do you take the name ‘Autism Speaks’ when clearly it is not speaking through you?

  Further, as the parent of an autistic child also diagnosed as low functioning, I would like to clarify that I don’t think anyone is suggesting that autism is something to aspire to. It is what it is. I don’t want my NT kids to be autistic. I don’t want want my autistic kids to be NT.

  Its about respect for who someone is in their entirety. Not picking and choosing the bits of someone you like or dislike.

  But feel free to disregard all that. That would be nothing new for CAN, or Autism Speaks.

• Ms Clark
  Jun 20, 2007 at 5:15 am

  I’ll second what Kev said. I have one NT adult offspring and one ASD adult offspring. I never thought my NT kid should aspire to being autistic, neither did I think that my ASD kid should aspire to being NT. It’s patently ridiculous, in either scenario. But Shestack made a dig at a straw-man who says that autism is something to be aspired to. So slick. So disrespectful of autistic people. So typical of something coming from Shestack and Iversen.

• Mark A. Craig
  Jun 20, 2007 at 5:22 am

  Neurotypicals pick and choose what they like about others ALL THE TIME, and selectively delude themselves about the parts they don’t like (or do like, if they’ve decided someone is an enemy). I was reminded of this ability to selectively edit reality the other day when I was talking to the ex-wife of an old friend of mine. She was acting exuberant - literally - about the prospect of him emigrating to Australia and realizing a persistent dream. That exuberance is contrasted, however, with the stories she tells of endless verbal abuse and even physical violence, and her absolute certainty that he “hates me in every bone of his body”. I asked her, then, given how cruelly he had treated her, how she could possibly feel anything like exhuberance for someone who had been so mean and brutal? How could she manage to compartmentalize that so completely when the urge or need suited her?

  She had no answer.

  I can’t manage that sort of compartmentalization or self-delusion. Whether I’m high-functioning autistic and that is causal, I can’t say. I simply can’t do it, and such mental gymnastics and behavior have disgusted me since childhood. I have walked away from family and friends permanently for lesser transgressions than what she describes, because I can’t manage these tricks. You might call it “forgiving and forgetting”, but that ain’t what I call it.

  I told my friend’s ex-wife that she needed to stop telling me anecdotes of his cruelty and cough up some objective evidence, because IF she was telling the truth I’d have to abandon him as a friend and tell him exactly and specifically why.

  I mention all this because this sort of mental gymnastics is exactly what Jon Shestack and other autism dogmatists are employing to shield themselves from reason and logic. It’s what allows them to selectively call someone an empty shell and justify their reckless and *selfish* impatience. I understand perfectly what fear and helplessness and “not knowing” does to the neurotypical mind: it leads them to “religious” thinking and dogmatism and self-delusion, to believing whatever it is that happens to bring them comfort and certainty. EMOTION drives their reasoning.

  Science is patient and fearless; “religion” is fearful and impatient… in this case the religion being that of worshiping at the altar of the Mercury god. Parents believe in such because it fulfills an emotional need that objective reality doesn’t.

  Keep your emotional delusions to yourself, Mr. Shestack, and stop imposing your profoundly irrational logic on people trying to exist as independent of you as possible.

• jon shestack
  Jun 20, 2007 at 10:37 am

  Leigh,
  You are right. I just wanted to show that any family no matter how fortunate or wealthy can have fights and disagreemensts over the best course of action to take, particularly when there are so few sure answers….Autism does sometimes feel like the disability dujour, but I still feel that like ADD if it is sometimes overdiagnosed, it is also still under diagnosed or diagnosed very late in large sections of the country. And it is true that all of these awareness efforts will ultimately create some huge bottlenecks at various agencies…but maybe that’s what is needed for local and state governments to realize what a criss in education they have on their hands.

  Ms Clark, We have lobbied to have ASD people on the board of the interagency committee,and we will probably prevail. it is very important to me that they ,too ,not miss out on geting bored to death twice a year in Bethesda. Maybe they will then have more sympathy for the NT activists. a
  As many of you have reported with relative rhetorical ease, there are no autistics on the AS board—-which actually looks a lot like the Republican presidential nominee lineup. You can be sure that I did not get to chose the board or the name.–If I had the board would have looked more like the Democratic Party lineup and still be called Cure AUtism Now Can a perfectly plesant aspirational name as far as I was concerned
  And Mark,I am terribly impatient with bad process, but endlessly patient with people. But if you wish me to stay away from you and yours, by all means, I will respect your wishes and stay away.
  I do w ant to say that you NTs seem really cranky and mad at CAN for I don;t know what. Be as diverse as you want, just get it that a lot of parents and their kids think there is nothing cool about seizures, stimming, mutism and high anxiety. I could be wrong but I’m guessing they hope someone will come along and discover a drug or therapy that makes their life easier and makes romance more likely.

  Finally I’m genuinely sorry to learn what a clearly unqualified , unwanted and arrogantly self-appointed representative I am.I may have to reconsider being involved in the issue.
  Best,
  JS

• C
  Jun 20, 2007 at 11:53 am

  Jon,

  What do you think of pity? Do you want pity for Dov, for yourself, for your family? Do you want Dov to feel self-pity? No, of course you don’t want that, none of us do. We all want the same things for our very different children. Stick around Jon, your opinions are very interesting and Kristna just might help adjust your perspective on autism.

• Autism in NJ: Is it the environment or the education?
  Jun 20, 2007 at 1:31 pm

  […] of better understanding and awareness? These questions are behind the exchanges (like the one here), on this blog and elsewhere, about the cause (causes) of autism and about how the changes in the […]

• Ms Clark
  Jun 20, 2007 at 1:40 pm

  One cool thing about being on the autism spectrum, Mr. Shestack, not the only cool thing, but one of them, is that we have immense powers of concentration for things that we are perseverating upon. I imagine any autistic person who wanted to be on the Interagency Autism Coordinating Committee would be an expert in autism, on a couple of fronts, not just from living autism, but also from studying it. Such a person wouldn’t GET bored at a meeting that had such a potential impact on that person’s own life.

  In fact when the rest of you would be packing up to go home, anxious to leave the building, the autistics would be wishing it could go on.

  Even if much of the meeting was procedural.

  But I see you keep making bids for sympathy. Here’s some to make you feel better. “Poor, poor, Jon Shestack. People are picking on him and he’s such a nice man … he only wants to help autistic children.”

  How’s that?

  I’d prefer to tell you to ***stop whining***, but I won’t this time. :-)

  Oh, I’m so sorry about how that Cure Autism Now thing worked out… saying “now!” for ten years must have gotten old.

  Autistics that I know of are *for* curing seizures, and other health problems, and for providing typical communication abilities to autistics, we just are pretty much against curing autism, not that you care what autistics think, of course.

• Julie
  Jun 20, 2007 at 1:51 pm

  Everyone parents adults with autism and experts who work in the field have an important voice that needs to be heard. I know that Rebekah is the expert on Autism in our house and would not want to exclude her from any conversation. She can not understand any of the research and can still not communicate with words very well how she feels but we have learned to read her signs and know that she better than anyone knows what it means to be autistic. She is one of theose high functioning kids who some feel should not be included in the autism catagory. I do see differences between her and other autistic children but I see more simularities. I think every person is different and having a diagnosis helps us understand and help her so many ways.

• Kev
  Jun 20, 2007 at 4:29 pm

  “just get it that a lot of parents and their kids think there is nothing cool about seizures, stimming, mutism and high anxiety”

  Me neither - but then I thought we were talking about autism?

  You might want to examine your propensity to whip out the ‘pity poor me’ card and confuse comorbidity with autism. That might go a long way towards revealing to you why lots of people are annoyed with CAN and Autism Speaks.

• Kristina Chew, PhD
  Jun 20, 2007 at 4:44 pm

  Living “now” has, or could have, some advantages for kids like my son (no seizures yet, not a lot of language but plenty of wanting to communicate; definitely stimming and high anxiety). At the presentation I was at last night, there was talk about teaching kids to use technologies like ATM cards to buy things—-the advantage over coins and bills being that there is nothing to count or add (my son does not yet know how to count change). A part of me said to myself, well of course Charlie needs to know the different values of pennies etc.; another part of me said we have this technology, it makes it easier for him, maybe can help him do it more. So why not?

  I can see how my son will learn to make his way in the world and it’s going to be different from the way I have. I don’t feel sorry that he won’t do some things, or sorry for myself that he won’t (if we all didn’t drive cars and took public transportation, might that not be better…….). If my mind spins in those directions, I have found myself unable to help him as best I should.

  Then again, I prefer just to carry an ATM card too rather than lug around a lot of coins.

  I guess it can be said, this is “never tired of autism” zone.

• jon shestack
  Jun 20, 2007 at 5:09 pm

  Hey Ms Clark,
  the IACC meetings would challenge even your legendary talents for concentration and perseveration as you searched high and low for signs of actual life or mission in the room. Though this may change this year though, as we have written in actual strategic planning responsibility. BTW, there will be several stakeholders on the committee. Throw your hat into the ring.Don’t think hhs has reached final decision.

  I would say, though that in order to be helpful you will have to exchage a kind of vile snarkiness for productivity and constructive suggestions.

  I am not making any bid for sympathy, but I do notice that you seem rather narcicssistically disinclined to feel sympathy or empathy for anyone whose view on autism differs from your own.

  Are you mocking me when you say I must have felt bad about Cure AUtism Now” after ten years? Well maybe that’s funny. Actually, after havng tried and not succeeded for ten years I felt the name was more relevent than ever.

  And I do care what autistic people think, very much so. I just don’t care that much for what you think because you seem like a fundamentalist, who by definition believes that everyone else is wrong and you practice the witty screed more that the art of dialogue.

  Best of luck to you,

  Jon Shestack

• jon shestack
  Jun 20, 2007 at 5:18 pm

  C
  I don’t want pity. I do want people outside the life to really understand its challenges and what the challenges maybe for Dov. Pity is sort of a poor cousin to true empathy and compassion, but as degraded as it is, it may actually be the gateway
  emotion to the higher, more enlightened feelings. And that is why I often write with a little violin music (metaphorically) in the background. I think Dov’s life is viciously restricted. And so does he. And ironically, the more he learns, and we try and give him grade appropriate education, the more acute this becomes. Of course this is all made worse by being 15. I will always celebrate my son’s glowing being, but I don’t think there is anything that could make me believe he would not be happier without these challenges. Dv is autistic, but he is not autism. I know this is not popular here, but autism does not define Dov, I believe that it obscures him, and that he is alwways to some extent fighting against it whether I encourage him to or not.
  js

• Mark A. Craig
  Jun 20, 2007 at 5:54 pm

  “…don’t think there is anything that could make me believe he would not be happier without these challenges”.

  Yes, there is. What makes most autistics happy is the simple pleasure of being allowed to perseverate without distraction or external hindrance, much like Aristotle demanded the Roman soldier not to disturb his circles (and we know how that turned out). We need to eliminate or abstract the “Roman soldiers” in autistics’ lives, including all the complex detritus of life they can’t manage, social and otherwise, and let them excel at what they *can* do, rather than expecting them to marginally succeed at things at which they’re not neurologically well adapted to succeed. I continue to suspect that autism is the early experimental stages of a “speciation event”, with all the successes and failures that implies (not every autistic will survive and succeed and thrive, any more than all neurotypical Homo sapiens do). Unless you want to be completely Darwinian and ethically neutral about it, you need to find ways of helping them find their strengths and exploit them, while at the same time creating a support structure to let them do that in their highly specialized way, and get the hell outta the way otherwise… not change them to fit common expectations. In part that also means remolding the world to be more accepting of their uncommon needs and more appreciative of the potentially incredible things they *can* do well.

• C
  Jun 20, 2007 at 6:27 pm

  Hi Jon,

  I disagree, pity enables the bestower to feel superior and separate while the recipient endures more loathsome sensations. Pity is consescending and should be avoided. And self-pity is truly destructive.

  None of us wanted our children to have autism. It’s tough enough just being a kid and growing up supposedly normal. But if we don’t accept them and love them just as they are I don’t think that they will be able to accept themselves. Please hear me: I completely advocate education and therapy and necessary medical treatment. But at the end of the day, my daughter is who she is, and she has autism. In that order.

  That said, it is tough enough to parent any child but a teenager with autism must be extraordinary!

• Ms Clark
  Jun 20, 2007 at 6:52 pm

  Mr. Shestack,

  I wasn’t actually thinking about myself in the role as sitting on the IACC, mainly because I have pointed out the glaring ethical shortcomings of others on the IACC, you, Ian Lipkin (blatantly abusing mice for his own and Mady’s political purposes and using NIMH funding to do so) and … Isn’t Allison Tepper (I think I’ll drive my car off this bridge with my autistic child in it) Singer on that committee, too?

  Oh, and I just sent a cranky email to Insel a week or so ago telling him how bad his chelation study was and how bad their minocycline study is and that Swedo might-could be asked to leave the NIMH to the benefit of autistics everywhere.

  See, I don’t just pick on spoiled Hollywood types.

  If the IACC was comprised only of people of solid ethical underpinnings, I would get along with them fine, and I dare say that I might even be the source of life in such a room…. or maybe just a source of movement, since I do have stims and stereotypies, not to mention fidgets…

  I’m not sure I’d have anyone who could care for my ASD kids’ special needs while I was gone…

  I was thinking of that the guy who used to work at Yale with Ami Klin, that guy who is on the autism spectrum and a PhD would be a good addition to the committee. I wasn’t thinking of throwing my own hat in the ring.

  Believe me, it was weird enough being on a task farce with Rick Rollens, sitting across a conference table from him… it was … Felini-esque….

  For now you and your fellow active ignorers of the concerns of autistic adults wil remain as unfortunate victims of my witty barbs. Sorry.

  Here’s a little social skills hint: When you spit in people’s faces and then tell them it’s raining–expect that they might be a little testy in responding to you.

  “Cure” as related to autism is a pathetic idea as the science stands now. “Cure” as related to autism is offensive to many (not all) autistics.

  Temple Grandin might not be offended by the word, but she has said that if you offered her a cure, she wouldn’t take it. Maybe you just need to think on that a while.

  My best wishes to Dov. May he come to love being an autistic person, and come to deal with the problems and challenges that being autistic and being the child of the founders of Cure Autism Now entail.

  Many of his problems are problems I am familiar with, both from the inside, and as a mother.

• Jennifer
  Jun 20, 2007 at 7:57 pm

  C wrote: “None of us wanted our children to have autism. It’s tough enough just being a kid and growing up supposedly normal. ”

  Myself, I am presently (ashamed to admit not formerly) proud to have a child with ASD. My kid amazes me every day. The amount of compassion and good will coming out of that child is amazing to me. And BTW, I also have a 16 year old NT child. At the moment, I’d be happy to morph the NT child into an autistic one. The NT kid is terribly conflicted, suffering from all those teenage, I have no friends, my friends are nasty and terrible, I love my friends even though they are mean, I can’t stand my parents stuff. My ASD kid looks on the bright side.

  Jon, you have a wonderful son. Please try to let go of all that nastiness.

• dkmnow
  Jun 20, 2007 at 9:43 pm

  Oh, the irony!

  Just the other day, I tried to leave a comment at Estee’s “The Joy of Autism” (for whatever reason, it wouldn’t post). And then, along comes the Shestack … oh, but I’m getting ahead of myself.

  Here is the comment I tried to post:

  Of all the arguments we should all be well prepared to counter, there is one I haven’t seen covered very directly:

  With their ubiquitous “1 in 150″ rhetoric, Autism Sneaks is quite deliberately exploiting the broadest possible ‘phenotype.’ Their ’statistics’ include every possible variant from every possible source, including every suspected case of Asperger’s, “HFA,” PPD-NOS, and so on, even including every case where some unnamed school counselor had some ulterior motive for slapping a kid with a spurious label.

  Now, if confronted about their rhetoric and practices, they’re sure to resort to the tired old lines about, “Well, this isn’t about those like you who obviously have no trouble functioning” (as if they could possibly have the slightest insight as to what our lives have been like), “this is about the poor helpless and hopeless lumps who will never be able to speak for themselves” (as if there has ever been any reliable validity to such absolute prognoses).

  That, my friends, is a classic bait-and-switch. When they try to pull the old “this isn’t about you” trick, we have to be prepared to effectively counter:

  “When you decided to USE US as the statistical basis for your melodramatic agitprop, YOU MADE IT ABOUT US. Your whole campaign is built on the ‘1 in 150′ argument — of whom, WE are the overwhelming majority. You can’t just ignore that now because you suddenly find it inconvenient.”

  [end comment]

  Now, where was I? Oh, yes. So, along comes Hizzhonor, Jon Shestack, with his usual bag of tricks, including (wait for it…):

  “…If we were so lucky as to find good treatments or a cure it would just be another choice, that they might make, since they are fortunate in being able to navigate the world well and make choices.Actually, it’s not really about them…”

  WRONG ANSWER, Mr Martyr. Here’s the blow-by-blow:

  1) Autism Sneaks USES us as a “statistical” wedge in their worldwide plea for pity-power,

  2) Real Autistics weigh in on how — with it’s unmitigated “tragic” rhetoric and “epidemic” hype — Autism Sneaks perpetuates and exacerbates dehumanizing stereotypes, spreading culture-wide prejudices that directly destroy the quality of life of millions of Autistics, FAR worse than actual autism ever could,

  3) In reaction to our outrage, they flip: “Well, this isn’t about YOU.”

  BAIT. AND. SWITCH.

  It’s nothing but cheap and mendacious populism, and though it may get them what they want for right now, the cultural consequences will continue to destroy the lives of ALL Autistics — including Dov, and all the Autism Sneaks poster-children — FOR THE REST OF OUR LIVES.

  And they wonder why we’re so “ungrateful.”

  [/end rant]

  Don’t tolerate the bait-and-switch, folks. Please. This manipulation at our expense must not go unchallenged.

• Mark A. Craig
  Jun 20, 2007 at 10:10 pm

  dkmnow:

  That’s the ugly result of the dogmatism and delusion I was babbling about: having chased away their fears and impatience for answers with delusions and dogma, and reassured themselves of the righteousness of their belief, they then see nothing wrong in doing *anything* to achieve and defend whatever goals they set. That’s from whence come these poor ethics and political deceitfulness that you and Camille described.

  There needs to be a deprogramming clinic for people like Mr. Shestack. Unfortunately, it might have to be as large as the continent of Australia to contain all the potential patients.

• Tom
  Jun 20, 2007 at 10:12 pm

  Jon,

  I bet your fellow board members and PR dept. are just pleased as punch that you’ve characterized the organization as a hopeless bunch of republican dinosaurs who move too slow and picked a lousy name for the organization to boot.

  You actually sent this note to Ginger Taylor. Wow.

  Between you and the Wright’s daughter, there soon won’t be much of an organization left.

  Keep up the good work.

• Ms Clark
  Jun 20, 2007 at 10:37 pm

  A PWOTN (person who ought to know) told me via e-mail just now that Mr. Shestack was rattling my cage when he said something about “throwing” my “hat in the ring”… the kind of position in question on the IACC committee never goes to commoners, but frequently goes to people who have made huge donations to politicians, or who have Hollywood connections, that sort of thing.

  There’s no ring for a commoner to throw his or her hat into, period. Thanks for spreading more lies, Mr. Shestack. You are such a nice man.

• Kristina Chew, PhD
  Jun 20, 2007 at 11:02 pm

  While we speak of “poster children” (cute ones, preferably), we don’t speak of “poster adults,” who can speak for themselves…….

• dkmnow
  Jun 21, 2007 at 12:53 am

  Nope. Once the “1 in 150″ rhetoric has sent all the gullible parents screaming for their checkbooks, the grandstanders no longer have any use for us.

  “We couldn’t have monopolized the pity-party without you. Thanks for being our strawman. Now, GO AWAY.”

• jon shestack
  Jun 21, 2007 at 3:01 am

  Ms Clark,
  IACC positions to not go to political contributers or hollywood types. They have gone to active people in the field who have made an effort to be appointed—written letters, had letters written in support .NIH council seats for non-scientist-public members have been somewhat more politicized, particularly in this administration. But in any event, an individual camaign donation (limited to about 4 thousand) does not purchase an appointment to a federal advisory commission.

  In this case, there will be several people from the advocacy community in the group. Some are mandated to be people with autism not only parents or guardians. I believe that all large advocacy groups were invited to suggest names, but that the final decision is made somehere in the office of the Secretary of HHS. The decison’s may have been made already, but they have not been announced. You might inquire at the secretary’s office.

• Ms Clark
  Jun 21, 2007 at 3:55 am

  It’s my understanding that outside of autism, and inside of autism, that having friends in powerful places is what gets one appointed to things like the IACC, and it’s easier to make those friends if one makes a hefty donation to the right politician, that is apart from the scientists who are there on the committee mainly because of their reputation as scientists. Which would explain why Geier and Bradstreet aren’t on there, for instance.

  But autistics, apart from a few Hollywood types–Mr. Spielberg and Mr. Akroyd, to name two–and a few computer uber-geek types, Mr. Gates to name one, don’t usually have the right connections. I hope whichever autistics ends up on the committee they will include biopsych research scientists with an ASD diagnosis, it would be a shame to miss out on that double perspective. As I said, there was one such who worked at Yale with Ami Klin. Amanda Baggs is already working with scientists at MIT as a peer, she might be a good pick. Amanda uses a keyboard to communicate and has been diagnosed as “low functioning”, so it would be harder to dismiss her view as coming from someone with “autism lite.” She has a great background in disability rights, as does Michelle Dawson, but Michelle is a Canadian, and I don’t know she’d qualify for that reason. Phil Schwartz would be a good one, too.

  My blog does have fans and readership at the NIMH, but I dont’ think that qualifies me to sit on the committee.

  Should be interesting anyway, too bad the details have been all so hush hush and kept in camera. I guess we all wait with bated breath now to see the color of the smoke rising from Dr. Insel’s office? I’m guessing that smoke the color of Autism-Speaks-Blue rising in the shape of a puzzle piece will mean they’ve elected the appropriate autistics? :-)

  Of course, I will blog the results.

• Bonnie Ventura
  Jun 21, 2007 at 11:10 am

  Mr. Shestack, what is your opinion regarding the prenatal screening research that is currently being funded by Autism Speaks? Are you in favor of continuing to pursue research in this area?

• jon shestack
  Jun 21, 2007 at 11:19 am

  Bonnie,
  I’m sorry but I don’t know what you mean? If you are writing about genetic research, of course I am a supporter. Genetic research is lense through which we might understand which metabolic or developmental pathways are affected and even which environmental factors are triggers, and though it has taken a long time and a lot of dollars, it is probably much faster and cheaper than very large epidemiological studies.

  Since there seem likely to be a dozen or more genes in autism(working in various combinations) I have always felt that genetic research was likey to help us design treatments, but would never yield a pre-natal screening test.So fortunately, I have never had to deal with that question.
  Hope that answers your question.

• Mark A. Craig
  Jun 21, 2007 at 11:36 am

  It didn’t answer her question. First you claimed that you didn’t know what she meant; then you proceeded to demonstrate that in fact you did understand her question - and intent - perfectly well; then, finally, you deliberately dodged it again.

  Maybe you’d like to explain that, Mr. Shestack?

  Those are earmarks of a delusional dogmatic coward, too afraid to confront and challenge his precious beliefs. Too afraid to admit that he supports eugenics as a “cure” for autism, perhaps? “Prenatal screening” is just a polite alternative term for eugenics.

  Only the village idiot didn’t understand her question and why you dodged it.

• Ms Clark
  Jun 21, 2007 at 2:00 pm

  Genetic research can be very helpful, but in the hands of the wrong people it WILL be used eugenically. That’s why its so important to have autistic people involved in all the major autism organizations, and not just two or three tokens.

  The NIMH should be, or should have been consulting with ANI and autistics.org or maybe the autistics who blog on autism-hub for their suggestions for who should represent autistic adults.

  It’s like they asked a bunch of white people, some of whom work at excluding Chinese people from their organizations, who would be good representatives of the Chinese American community.

  Maybe it’s in 8 years that they will come up with a prenatal test to prevent the births of any and all autism spectrum people, including people like myself, and Nobel Prize winner, Vernon Smith
  http://www.msnbc.msn.com/id/7013251

  There’s no way to say whether an ASD person will end up as Asperger’s or Autistic (non-verbal, etc) from genes. A prenatal test would wipe out all kinds of mental diversity from the gene pool. We don’t know if Vernon Smith started out as a “classic autistic,” either. Maybe his parents would have hoped they’d had a different kind of 2 year old. I’m glad they didn’t select against his birth, aren’t you, Mr. Shestack?

• Bonnie Ventura
  Jun 21, 2007 at 2:40 pm

  The link provided above by Ms Clark leads to an article on MSNBC.com in which Dr. Joseph Buxbaum, director of the Autism Genome Project, predicts that genetic research will result in a prenatal test for autism by 2015.

  Given the fact that you were interviewed for the same article, Mr. Shestack, I find it hard to believe that you were unaware of it.

  According to a recent “Science News” post featured on the Cure Autism Now site, the Autism Genome Project has identified two genetic markers for autism:

  http://www.cureautismnow.org/site/apps/nl/content2.asp?c=bhLOK2PILuF&b=1289189&ct=3593451

  According to Dr. Buxbaum, “If we get to the point where we have 10 genes that predict risk to some significant degree, then there is a prenatal test.”

  In addition, Mr. Shestack, I believe you know that the research funded by Cure Autism Now already has produced a prenatal screening test for Rett Syndrome. Indeed, Cure Autism Now awarded a “Genius Award” to Dr. Huda Zoghbi for her research on the MeCP2 gene:

  http://www.cureautismnow.org/site/apps/nl/content2.asp?c=bhLOK2PILuF&b=1289189&ct=1814251

  The identification of this gene has resulted in its worldwide use as a marker for prenatal testing and abortion of fetuses that have Rett Syndrome. Here’s a link to an informational page by a laboratory (one of many) that provides prenatal screening for mutations in the MeCP2 gene:

  http://www.labplus.co.nz/rett.htm

  Are you ready to give me a straight answer yet, Mr. Shestack?

• Kristina Chew, PhD
  Jun 21, 2007 at 3:41 pm

  The question of a prenatal test for autism does seem to be implicit discussions about genetics and autism, at least in popular discussions—-as indicated by the May New York Times article on prenatal testing and Down Syndrome. I think genetics research very important (for autism and otherwise) but the ethical questions raised by this kind of research and disability are huge and need to be directly addressed.

• jon shestack
  Jun 21, 2007 at 3:59 pm

  Craig and Mark,
  I dodged nothing. You are both extraordinarily impolite in your style of writing, and it should come as no surprise if after a while people get exhausted tryingto have dialogue with you.

  I was not aware of what Buxbaum said, and on’t remember the article whether I’m in it or not. And certainly I have not marked my calander for 8 years in the future when Joe thinks we will have a pre-natal test. But more importantly, I just don’t agree. Ten susceptibility genes do not make a genetic test, and couldn’t possibly under any set of ethics help guide a decision. I firmly believe that autism is a result of gene environment interaction, and that no real assesment of risk or outcome is possible from genes alone. Of course, the future could prove me wrong , and there may end of being one incredibly penetrant gene or one hugely mutagenic environmental toxin.But as of now it does look there are many different pathway to many possible outcomes.

  I wasn’t aware that CAN funded Dr Zoghbi’s initial work of discovery on the Rett gene, though I am aware that she received a genius award and it was well-deserved.

  If your question is, am I in favor of continued research into the genetics of autism, I am.

  Is my personal goal in promoting that research the creation of a pre-natal test for autism?No, it is not.

  Once again, I hope that answers your question. I’m not being coy about it. We fund a lot of grants. I don’t sit on the Sab. But in any event, I think I have tried hard enough to answer your question.
  JS

• Julie
  Jun 21, 2007 at 4:19 pm

  I think that it is not the issue of a genetic test but what would be done about with the knowledge. I think that knowing that the possibilty exists and being able to get your child the education and supports that they need to succeed at a much earlier age would be extremely helpful. It is using that information as a reason to abort the fetus that I take objection to. Of my three children Rebekah is our only daughter and the only one with autism. She is also the most loving and concerned of our three. She has her issues and they are many but they pale in comparison to the love that she gives. She does not hug or kiss often since she does not like to be touched much unless she initiates it but there have been so many other ways for us to expereience her love towards us. I find it sad when parents get hung up on the “norm” and what they expect the child should be like and miss out on the child that they have. I guarantee you none of our children are what we expected but that are all wonderful gifts.

• kristilee
  Jun 21, 2007 at 5:21 pm

  I do not have autism and do not have a child or relative with autism. I have not knowingly met anyone with autism, though admit I may have met someone who has it without my knowing.

  I landed at this website by chance and am completely appalled at the bickering, bitterness, and general maliciousness in this community! And I had heard that the Parkinson’s groups were fractured…Wow. Seems like this Jon guy has tried really hard to communicate openly, and very inclusively I might add, and yet you all pick him apart like animals. What have you done for the cause? How sad. For you and for everyone with autism.

• Kristina Chew, PhD
  Jun 21, 2007 at 5:28 pm

  Thanks for your observations, Kristilee. The history behind many of the statements and views expressed here is a rather complicated and detailed one—-I do think that, ultimately, it is through such exchanges, impassioned as they are, that new understanding results.

• Leigh
  Jun 21, 2007 at 6:17 pm

  And I do care what autistic people think, very much so. I just don’t care that much for what you think because you seem like a fundamentalist, who by definition believes that everyone else is wrong and you practice the witty screed more that the art of dialogue.

  Woo Hoo!! Rock on Jon!!

  Actually, these little spitting matches are one of the reasons I usually stay far, far, away from message boards, or blogs, that focus on autism.

  I actually have much more to say on the topic, but I have to rush off to a meeting about suing our local school district on their total failure to supply reasonable services for our autistic children.

  I’ll be back:>)

• culvercitycynic
  Jun 21, 2007 at 6:29 pm

  Jon:

  It really might be helpful if you issued a public statement apologizing for the “empty shell” statement(s). Not too long ago I spoke with a member of the CAN SAB. This researcher, was very kind, but had bought into the “empty shell” rhetoric and was stunned when Dov did communicate via his letterboard. Do you see that enormous kinds of research may have been missed over the ten years that the “empty shell” premise was in vogue? Please, I gently ask, that you address this in a pubic manner and offer an apology.

  Thank-you.

• Ms Clark
  Jun 21, 2007 at 6:45 pm

  Can I clarify, that Jon was being disengenuous, to say the least when he said that he cared what autistic people think, but didn’t care for what i think because he has judged me as a “fundamentalist.”

  Jon and his wife have been aware of the gentle statements made by autistics about the offensive nature of his and his wife’s organization and their tactics, including their promotion of a non-existent epdiemic, the rhetoric of which handily dismisses the existence of a million autistic adults in the US, but raked in the donations for him and his wife and their organization. We have been trying to get them to behave like ethical humans for about 5 years that I know of, but they are like all teflon coated and botox injected and impervious to criticism, and blind to the most polite pleas for a change in their rhetoric.

  Maybe that will change, but for now, the Shestack/Iversens are being roasted (by autistics including Tito Mukopadhyay who plainly claims that they personally abused him) and they well deserve it.

  It’s nice to see that Shestack’s bids for pity were so effective. Maybe he’s had a lot of practice at that.

• Leigh
  Jun 22, 2007 at 8:08 am

  Since I rarely visit blogs like this, I am not up to speed on whatever history/drama y’all have running between you. So while I have been intimately involved with autism for the past 18 years, I am basically reading the above comments, and fast coming to the same conclusions as those posted by Kristilee.

  This is the internet, and therefore available to anyone who stumbles into the arena. To read these comments as an outsider, is to be struck by the blatant hostility and bad manners displayed by some of you. How much do you think your attitudes advance the cause of autism (regardless of what Mr. Shestack has, or hasn’t, allegedly done in the past)

  No human is perfect, and no group of people will ever be totally in sync with each other at all times, but some of you need to dial back on your ill disguised hostility. Mr. Shestack has at least had the courtesy to maintain a modicum of decency, and civility, in his responses. I can’t say the same for the most vocal of y’all.

  If you don’t like the way AS is progressing, then get off your collective behinds and volunteer to sit on a committee, or lobby to be on the board. To do any less is to do exactly what Ms.Clark accuses Mr. Shestack of doing…..whinning. Or perhaps you prefer things the way they are so you can complain about how others do things. By doing that, your comments read as another of Ms. Clark’s accusations….that of bids for pity ‘Oh, poor us, we’ve been left out of everything. Nobody listens to us’

  Again, this is why I stay away from these forums. They all seem to be filled with people who are hostile, angry, and looking for someone else to blame rather than doing something constructive about the very cause they claim to be so invested in.

• Kristina Chew, PhD
  Jun 22, 2007 at 2:32 pm

  Thanks, Leigh; are you a parent of an autistic child or a teacher? This particular post is on issues that many have a lot of opinions and passions, and questions, about. Far from whining, Ms. Clark, Bonnie Ventura, and many other of the commenters are long-standing autism advocates who are constantly engaged in advocacy, via the internet (Ms. Clark’s Autism Diva blog) and elsewhere.

  I think tension is not only inevitable in these sorts of discussions, but also necessary. There are many more ways to advocate for autism than to talk about curing and treating it. To quote from a famous advocate for civil rights and much more, “….. Socrates felt that it was necessary to create a tension in the mind so that individuals could rise from the bondage of myths and half-truths to the unfettered realm of creative analysis and objective appraisal”…….I think we are on the way, but it’s a long journey and full of bumps and dead-ends and detours on the way. The good thing is that we keep talking and listening, and listening for those whose voices have yet to be heard.

• mysonsdad
  Jun 22, 2007 at 2:54 pm

  Kristina, I second your recently mentioned comments!

  Also, Autism Diva’s blog is intellectually honest. Ms. Clark, you and Kristina are excellent voices for our community.

• Ms Clark
  Jun 22, 2007 at 4:06 pm

  Leigh is correct of course, but she can’t see what it was in Mr. Shestack’s comments that were “button pushing.” It’s like coming upon a fist-fight on the street and deciding from the outside, knowing nothing, who started it. You might decide that the more angry acting person started it, but you don’t know if the other fellow is a long time bully and something just snapped in the mind of the angrier person.

  I appreciate your comments, very much Kristina and mysonsdad. Other autistics are much better than I am at retaining the ethical and social upper hand by not “flying off the handle.” But, I really feel it was time for Mr. Shestack to face some of the anger that he has been a part of stirring up for years and years. I’m not sorry that I showed him how angry I am at him and his wife.

  Tito M. is angry, too, but tends to remain very polite. I’m still not seeing any apologies for what Shestack/Iversen did to him and his mom.

• culvercitycynic
  Jun 22, 2007 at 4:13 pm

  “Since I rarely visit blogs like this, I am not up to speed on whatever history/drama y’all have running between you…. [I am] … fast coming to the same conclusions as those posted by Kristilee.”

  One may want to avoid drawing hasty conclusions when one is not “up-to-speed” on the subject matter.

• Kristina Chew, PhD
  Jun 22, 2007 at 5:26 pm

  I learned a lot from this exchange—-things needed to be said, and they got said.

• Julie
  Jun 22, 2007 at 7:34 pm

  I also learn a lot from these exchanges and find it helpful to have a place where I can express my opinion even though it may differ from others. I do get offended personally when people say certain things especially when I feel they have made a comment that insinuates that my daughter is less than a whole wonderful person. I feel that it is hard for someone who is not a part of these discussions to understand the emotion behind the e mails and could jump to conclusions. I would encourage them to read more and really listen to what everyone is saying before they decide who is reacting in the wrong. As I see it no one is necessarily wrong just different opinions and all passionate about hteir beliefs.

• Leigh
  Jun 22, 2007 at 7:44 pm

  Dr. Chew - I am the mother of two children with autism, and the wife of an Aspie (gee, I wonder why I’m so sure genetics has something to do with all of this;>))

  Thank you for the link to Ms. Clarke’s blog. I look forward to reading it. Perhaps it will fill in some gaps for me.

  Ms. Clarke - I can appreciate and understand your anger….regardless of its source. I’m a firm believer in righteous anger. What I’m not a fan of is sarcasm and bad manners. For me, it unfortunately diminishes and detracts from whatever good ideas, or excellent points, you may otherwise make. I find it especially distasteful in a public forum.

  Which segues neatly into Culvercitycynic….since my last comments were based solely on the interactions between the players on this particular blog, I’m quite comfortable drawing the conclusions I did….I cannot, nor did I, comment on the past behavior of any of the individuals, I simply commented on what I was seeing here and now….and it ain’t pretty.

• Kristina Chew, PhD
  Jun 22, 2007 at 7:51 pm

  Thanks, Leigh………. There is much worse elsewhere! And glad to “meet” you.

• mysonsdad
  Jun 22, 2007 at 8:00 pm

  Julie, very good point(s)!

  Autism remains as baffling to those attempting to manage it as it is to those affected. Until it is more clearly understood, until we are offered more than a spectrum of widely varying theories and studies about what it is, we will continue to hear widely varying ideas about what to do. My son’s autism might have several answers. Today, we’re addressing gut related issues. Tomorrow, who knows.

  “The difference between involvement and commitment is like an eggs and ham breakfast. The chicken was involved. The pig was committed”

  I do get from all the posts that everyone seems very committed. That’s great for our children.

• dkmnow
  Jun 22, 2007 at 8:12 pm

  Kristina: “There is much worse elsewhere!”

  No joke. As if the EoH forums weren’t bad enough, I just read the recent entries by John Best, Jr, at “Hating Autism”…that guy sounds more and more like Fred Phelps with each passing day.

• dkmnow
  Jun 22, 2007 at 8:22 pm

  mysonsdad,

  David Kirby was involved. Jon Shestack is committed. That doesn’t stop their ideological offspring from doing equally enormous harm to the entire Autistic community.

  Autism may be a good deal less “baffling” to those of us who live it than to those whose glorious mission it is to “manage” us.

• mysonsdad
  Jun 22, 2007 at 9:22 pm

  Cant imagine trying to manage you dkmnow, so you may have a point.

  How do you suggest we communicate with those who have differering ideologies? Furthermore, if you’ve made autism less baffling please share your knowledge. Seriously, I really could use your insights.

• Kristina Chew, PhD
  Jun 22, 2007 at 9:43 pm

  I’ll just say, like more than a few bloggers, I have gotten some interesting emails.

  We all think enough and so much about autism that we write publicly about it—-I am glad to have a diversity of views. I hope that won’t stop.

• Leigh
  Jun 22, 2007 at 10:10 pm

  “There is much worse elsewhere! And glad to “meet” you.”

  And you also:>)

  Yes, unfortunately, I know there’s worse out there. My daughter is also hearing impaired, and should you ever care to see people behaving like they’re at the Colosseum, while the lions devour the Christians…..then you might try participating in a discussion about the virtues of sign language v auditory verbal therapy. Truly not for the faint of heart:>)

  I do wish to say, to all of you, that no matter what my personal opinions are of how you choose to conduct yourselves here, I appreciate anyone who invests their time, and energy, in the effort to bring greater awareness to the mystery that is autism.

  I would love to have enough spare energy to actively do likewise. However, between coping with the daily meltdowns of two autistic and one aspie, and funding the multitude of therapists we seem to employ, I don’t have much left over for activism, or bickering:>(

• Kassiane
  Jun 23, 2007 at 2:42 am

  It’s a goodly sight easier to sit on a committee when, like, they will answer your communications. But ya know, we aren’t invisible. They should have approached us FIRST. And don’t get me STARTED on individuals. Including Mr Oh Hell I Can’t Spell It But It Starts With An S. Or Ms Singer. Or the Wrights. *insert gagging here*.

  As for manners. Well. Frankly. Calling me an empty shell, toxic waste dump, metabolic disaster area, or collection of genetic errors (heard em all) all falls in the category of “flat out asking for a fight”, and CAN/AS/ONAG (Other Nauseating Autism Groups) are ALL guilty of promoting these ideas at one time or another. THEREFORE, technically we’re holding back.

  Besides which, you spend all this time teaching us to communicate only to be pissed off that we dont honey glaze everything? You can get pleasantries or real information. Real information is more useful. Once you’ve entered the realm of slapping me across the face with a glove, verbally, you’re lucky if it’s just snarky OR patronizing and not BOTH.

  Can’t speak for everyone but I’m sure I’m not a N=1 case.

• Rated G
  Jun 23, 2007 at 5:47 am

  […] sometimes very heated back and forth exchange in a post about the Wright family feud has been noted. For myself, I think some tension inevitable when so much is at stake in regard to […]

• Ms Clark
  Jun 23, 2007 at 2:39 pm

  Kassiane wrote:
  “As for manners. Well. Frankly. Calling me an empty shell, toxic waste dump, metabolic disaster area, or collection of genetic errors (heard em all) all falls in the category of “flat out asking for a fight”, and CAN/AS/ONAG (Other Nauseating Autism Groups) are ALL guilty of promoting these ideas at one time or another. THEREFORE, technically we’re holding back.”

  Exactly, and when we say something back (which was really pretty polite–I never called Jon Shestack “soulless” or an “empty shell”, for example) he attempts to shut us up by saying we’re just being mean to him and Autism Speaks, et al. Then he pulls this rhetorical trick of acting like one of us COULD get on a committee he is on, if only we were polite.

  The parallels in this conversation with classic racism and the unfair and dangerous wielding of power are pretty stark.

• The false dichotomy of genes “vs.” the environment: Responses to the NY Times
  Jun 25, 2007 at 1:29 am

  […] York Times has published seven letters in response to last Monday’s front-page article on the Wright family feud. That article described autism research into the causes of and treatments for autism as either […]

• Myth, Science, and a Trial: Vaccines and Autism
  Jun 30, 2007 at 2:51 am

  […] into sharply worded exchanges regarding beliefs that espouse either one position or another: Biological or genetic. Anti-ABA or pro-ABA. Cure or acceptance. Epidemic or no epidemic. Such black-and-white thinking […]

• Gavin's Mom
  Jul 1, 2007 at 4:48 am

  Wow. I am not sure how I happened to come to this ongoing “feud”. I do know that with any issue there will always be different points of view and often there are truth’s in each person’s position.

  What I do know is that there is an increase in cases of children affected with “autistic like” “symptoms”. There needs to be definition here that “being autistic” like Temple Grandin, and having “autistic symptoms” which have alienated my son and caused him to endure improper and inappropriate disciplinary treatment at school are different things.

  People like TG don’t need to be “cured”. “Symptoms” of Autism, like a lack of ability to communicate, severe tantrums, self harm, biting others, problems with transitions, an unusual need for consistency and structure, difficulty with reading and handwriting — self-regulation, sensory overload, extreme anxiety, unusual fears, etc, etc, need resolve.

  I am thankful to any agency which aims to bring broader awareness to the “symptoms” that frequently define “autism” in young children. I am thankful to any agency that will fight to gain recognition that things like gluten and casein, and altered levels of nutritional deficiencies requiring a greater level of support through supplementation, ABA programs, other instructional supports, and most importantly early identification and intervention are key to helping children affected by this ND condition to assimilate learning and self-regulation.

  I can only comment based on my own experiences. My son, if properly identified at an early age by all the psychologists, speech therapists, and pediatricians, may not have had to endure being pulled out from his kindergarten class to the high school safety officers office and made to stand on one leg with his arms out to either side “until he could behave” — which meant to sit quietly, not dash out of the room or not go under the tables, not yell out at inappropriate times, to participate with the group and not gravitate to the top of the playground equipment and “ignore” the teachers calling for him to come down during recess — which resulted in no recess for the rest of the school year.

  With broader understanding and better ways to understand the “symptoms” under the Autistic umbrella, maybe my son’s teachers and school psychologists will not be prone to putting him in a seclusion room left screaming, banging his head, biting his nails to the bleeding point, or causing him so much emotional stress that he reverted to severe autistic rather than “mild”.

  With bringing broader knowledge and evidence to the general population about biomedical approaches, maybe we won’t be referred to CPS by school personnel for limiting gluten/casein/soy/eggs/sugar from his diet (even though proven through laboratory study), or for seeking alternative treatments such as NAET, and requesting administration of his “supplements” by the nurse during lunch time.

  Maybe with all the attention these issues are getting, we who have been fighting that all of this makes a difference in limiting the “symptoms” to people who have insisted we’re crazy and just need to “discipline” him better, as a result, will give us some validation that the ridicule is worth it and maybe we really were parents whose hours and hours researching and learning on our own, unsupported, were not in vain.

  Yes, we have a son who is “labled autistic”. Giving it a name helped us know how to find the right treatments that have made a difference. Broader knowledge has helped those working with him understand that this bright, verbal (result of 8 1/2 years ST, 3 yrs. OT, and too many to count “non-traditional” treatments) and loving boy with “unusual emotional responses” is really not “conduct disordered” or “emotionally disturbed”.

  I don’t care which agency brings reinforcement or awareness to the general public, fights for better educational treatments, early diagnosis, etc., etc.,

  Maybe through the research and validation that diet changes alleviate “symptoms” that interfere with learning and functioning we may not address ALL cases of autism, but at least many.

  It may be better said that there is no “cure” for Autism, but the negative “symptoms” related to Autism which interfere with or mask the beauty and individuality of this ND condition, do need a “cure”.

  One year on the diet and supplements, coupled with knowledge and training, added with a thoroughly harsh complaint to the State Education Agency, a now responsive and ABA trained teaching staff, and my son is “functioning” in a mainstream classroom, enjoying reading and writing, playing with same age kids, carrying appropriate conversations….. has he been “cured”??

  No, but he is happy!! He is not crying every single day at the slightest mishap or change in his routine, biting holes in his shirts, sitting on the sidelines at sports or recess eating dirt or “playing” (aka: overfocused) with ant piles.

  Without the heroic efforts of EVERYONE who has brought Autism, autistic symptoms, dietary interventions, scientifically based research on educational modifications/interventions, to the forefront, and given parents tools to help our children succeed and make measurable progress in our own individual situations; none of Gavin’s progress would have been possible.

  I thank everyone in the Autism community for all the many individual and diverse contributions.

  Now, what about that jet plane, huge salary and other enormous fringe benefits provided to people of Autism Speaks? Anybody know anything about that?

  I am an advocate too, for my son. But it took leaving my job as a graduate level professional and losing my health benefits to do it. A story all too common I am sure…..

• Kristina Chew, PhD
  Jul 1, 2007 at 12:28 pm

  It takes a lot more than a village to help our kids—-my son is happy now after having endured some similarly terrible experiences in classrooms where staff, however well-intentioned (or not…..), did not know what to do for him. Some time ago I might have thought that “just being happy” was not enough—-he ought to be mainstreamed (he is in a self-contained ABA classroom), he ought to be able to manage interactions with peers on his own, and a lot more—–but knowing that my son is happy signals to us that we have found the right things for him and that he feels loved and understood and appreciated for being himself. A great boy, like Gavin!—thank you for sharing his story.

  As for the private jet—-once I saw their address was on Park Avenue in NYC, I figured there would be a few perks.

• Gavin's Mom
  Jul 1, 2007 at 2:49 pm

  Thanks Kristina — we are all connected through our children and similar experiences. A truth to the saying “it takes one to know one”!!

  I am sorry about all the distress that appears between JS and the rest of the people blogging here. I have nothing to offer either way. There is a bigger fight out there, and a need for unity (strength and power) among the Autism/Aspergers/PDD/ADHD advocates.

  Our children suffer no matter where they fall on the spectrum, for a variety of reasons. There are “causes” for the increase in these conditions; treatment options — Pharmaceutical companies… well that’s another fight.

  The future for these kiddo’s and our communities, our educational, social service, psychiatric, financial and criminal justice systems will soon become unable to handle the generation’s of kids are affected negatively in some way. I would like to find more information on projections and a plan for how to address the more pressing issues of how, as a society, a large “community” or “villiage” we are going to help our children become independent and self-reliant, contributors vs. dependents in the future of all. For those whose outcomes may not include independence and self-reliance — what and how are we going to take care of all these kids as they enter adult hood??

  You may have heard about an 8 year old autistic boy who “accidentally” caused the death of one of his 9 month old sisters (twins). Because I am on the Board for the agency which provided help to the family I had an opportunity to meet directly with the the boy and his family.

  It was a terrible situation in which the media inappropriately reported the circumstances and paired the situation to children who “kill” children and followed by a story reporting what is wrong with the criminal justice system in that children under the age of 10 could not be held accountable.

  As I mentioned, I met with this boy. Clearly “autistic”. What this means to many is the inability to see outside of themselves, sense of danger, cause and effect, possess judgment skills…. even after his 9 month old sister was dead from falling down the banister (the “slide”) the boy continued to care for her, attempted to feed her cereal to help her wake up… etc. What’s going to happen to this boy if this part of his intellect and development is arrested at this stage??

  As parents of these children, we are all so stressed, our life expectancies are not promising. Who will care for our children when they still need help when they are adults? Are we establishing plans for them? Is society ready to do the right thing for them? Are there adequate resources?

  Yes, we need a cure — or at least something!! Do you see the crisis pending? I do, and I am very concerned.

  Regarding the comments JS made, I hope there can be some resolve so we can move on to the reality of what will become of our children and nation.

  What upsets me most, and JS if you read this please explain, is the information that came out based on the financial audit of Autism Speaks. JS, Please put the money where it is grossly needed. So many of us parents have had to go to one income households to fight for our kids. Personally, I am blessed that we are ok. Many families are not. What can AS do to help on the “front lines”? Many parents have to choose between their financial stability, saving for the future and their children’s needed therapies.

  It really concerns me that there is possible abuse of funds, donated funds –from people who really would scrape the bottom of the barrel if it meant to make a difference to help children, by the “corporate big heads” at Autism Speaks.

  Say what you will, JS, but at the end of the day, when you soak into your lifestyle, please think about the lifestyles the majority of the parents with children on the spectrum are having to endure — and they don’t whine about it.

  Please, I pray for legitimate, responsible, and ethical use of funds that are meant for the improvement of “helpful” research and treatment programs, advocacy, and most importantly — the children who are affected.

• Gavin's Mom
  Jul 1, 2007 at 3:10 pm

  Here is a copy of the info. re: inappropriate or questionable use of funds at Autism Speaks. This is the info that needs to be addressed by JS, in my opinion. THanks.

  >>

  I am a professional that has reviewed many non profit organization’s IRS Form 990s. Autism Speaks Form 990 raises serious red flags. Serious. This is all from the official filing for 2006.

  1. Three members of the Board of Directors received $2.5 million for their own organizations.

  2. The President Mark Rothmeyer, just received a 5 year contract for about $2,000,000

  including bonuses with no prior background with autism.

  3. The grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed

  4. The location of this small and new foundation is in very expensive downtown New York facilities rented for $200,000 by the institution that is run by the Chairman of Autism Speaks.

  5. A expense of a Private Jet plane for $57,000 was noted. This is very unusual for a new non profit groups.

  6. The head of the scientific review received the majority of the funds for 2005 for his institution for a data base - almost $3 million

  Since the funding is now from the public - and the advertising and promotion tugs at the publics heart strings with images of families in need - the funds collected MUST be about those it raises the money for.

  The following are all taken from the Form 990 filing

  Web Site $830,000
  Software for the computer $514,000
  Lawyers $440,000
  Computers $337,000
  Public relations