MedWorm: Autism

Not sparta

Interverbal: Reviews of Autism Statements and Research — Sun, 06 Jul 2008 05:45:00 +0100

The following post is offered as a reply to Christschool's recent post "Skinner Confuses Science with Terminology". - Noam Chomsky". My responses to Christschool will be in a point by point basis."It's been my experience that behaviorists are quick to recoil and become defensive with inquiry that challenges their "science". From my observation, behaviorist's reaction to skepticism is very similar to the alternative/biomed advocates."I think it first necessasry to draw a distinction between the science of behavior analysis and the philosophy of behaviorism. These are not quite the same thing. It is possible to practice the techniques of behavior analysis and not philosophically be a behaviorist. I would argue this happens regularly in clinical psychology.Some may ask; doesn't it seem strange that there is both a science and a related philosophy? But I would argue that this is not strange at all. I myself belong to several philosophies which complement and direct my inclination to science, but are not part of science itself. These include the philosophies of skepticism, empiricism, determinism, and materialism.But to return to the point, yes, some behavior analysts can be very quick to dismiss criticsm. Our approach can be dogmatic. I would even argue that as a field, behavior analysts have been worse than average at accepting criticism from those outside the field. One of the ways I have selected to help counter this trend, is to operate a blog, which at least on occasion, delves into behavior analytic issues.However, it would be faulty logic, a non-sequitur in fact, to assume that because behavior analysts are on average worse at accepting criticism from the outside, that the science of behavior analysis is a psuedo-science."Both groups cite as evidence studies, anectdotes and faux terminology to support their positions."The idea that it is faux terminology is the idea one would need to first prove. This is the fallacy of begging the question. As to the anecdotes, he is correct, even though this is a person specific error."The behaviorists use Lovaas' 1987 study and his unique 47% indistinguishable criteria HYPERLINK "http://www.autismpartnership.com/test/ibt.htm"(which has never been replicated independent of Lovaas' small group of behaviorists) to sell their "services".""This is simply not true. There have been any number ABA autism group studies that were not conducted by Lovaas' immediate students. An even basic review of literature will show this to be the case. Also, Sallows & Graupner (2005) state:"We found that 48% of all children showed rapid learning, achieved average posttreatment scores, and at age 7, were succeeding in regular education classrooms. These results are consistent with those reported by Lovaas and colleagues (Lovaas, 1987; McEachin, Smith, & Lovaas, 1993)."One can argue that Sallows & Graupner (2005) also had unresolved threats to the validity of their study (and I would agree) but one can not argue that they produced different results from Lovaas (1987).Furthermore, it is the ad hominem fallacy, to argue that one is wrong and/or dishonest because of who one is. The fact that some of the research has originated by Lovaas' students should not bias us in interepreting the results. I do not argue that Christschool is wrong for the following reason, but I will point out that the group I usually associate with this fallacy are the vaccine etiology of autism advocates. This seems like an appropriate comparison for the sake of accuracy, since Christschool states that his latest article compares behaviorism and the alternative/biomed advocates."However, they conveniently leave out from their marketing materials the fact that the children in that study were never randomized and were subject to physical aversives. Is that honest or is that protecting the dogma of behaviorism?"Fair question, behavior analysts like any human service providership must make sure the public and specifically consumers have enough information to make an accurate judgement. This has not always been done correctly in my view. However, Christschool had best be careful to acknowledge that this is individual specific. It is not nearly true of all behavior analysts."Do scientists leave out very relevant facts (no randomization and the use of physical aversives) in discussing their results with prospective customers?"Yes, sometimes they do. I don't agree with this practice, but this failure is hardly limited to behavior analysts. One of the most common (and most valid) criticisms we hear from the anti-vaccine movement, is the lack of correct sharing of information by pediatricians and vaccine manufacturers. Nor is it even specific to the sciences in the human service fields. This is a valid critcism of behaviorism (in some cases), but to be consistant, Christschool would have to be willing to apply this criticism broadly across many fields of science. I don't want a problem that exists in the broader subfields of science to be attached merely to behavior analysis."If challenged, both groups simply recoil like a viper"Yes, some behavior analysts and advocates can react this way to criticism. Not all do. Some of my formative experiences in behavior analysis were learning the polite (or mostly so) give and take during debate about behavior analysis with course instructors and professors. So, when faced down by a glaring 19 year old angry about the accuracy of the Matching Law, what do you suppose the much older and well known professor did? Tell him to be quiet? Tell him he just didn't get it? Mark down his grade in participation points? No, he invited me to have an in depth discussion after class. The professor and I spent two hours going over the issue. During which time I was treated with patience and politeness.That issue has still never been resolved to date. But that professor provided a wonderful example of how to approach disagreements. How many venerable professors in any field, could be so patient and selfless with their time? Now the point of my anecdote is not that dogmaticism does not occur, but that here is at least one example were it did not. I would argue that there are others..... many others."ready to strike rather than acknowledging that perhaps they could be wrong."But doesn't this depend on the quality of the criticism? And why criticism may always be necessary to guard against dogmaticism, not all criticism has merit. It is not the job of scientists to ackowledge any criticism, but to scour it for merit and see if it contains it. Not all criticism has this. There is some criticism so bad, it merits serious criticism in and of itself. That is the catch in science or scientific criticism. You can easily end up looking like a fool. And if you are not willing to take this risk, then you can not really do science of scientific criticism. And this is true for any advocacy movement as well."For instance, and I don't mean to pick on Interverbal here, but when I stated that ABA has caused PTSD in autistics (based on information supplied to me by 2 autistics who had been diagnosed with PTSD as a result of undergoing ABA as children) and that there aren't any studies that have been done to look into possible complications from ABA such as PTSD, his response wasn't what I would expect from a curious and science based person.Me:"The field hasn't done any studies that I know of that look at PTSD in those that went through ABA"Interverbal:"Nor should they. There is no real suggestion of an ABA-PTSD connection. The suggestion there could be, was made and continues to be echoed mostly by those in the pyschodynamic paradigm. There are lots of genuinely good criticisms of behavior analysis and ABA in autism specifically. A possible PTSD connection isn't one of them. This is the type of comment that behavior analysts laugh off and correctly so.""Christschool asks me to accept as evidence second hand information I have no way of checking. I can't possibly assess this information agaisnt what I know about science, because I can't possibly access this information at this time. I do not accept this argument for behavior analysis and I would not accept it at any other time either. I am happy when I see that I have made an error to acknowledge it in full and move on. However, there is no error here. I completely reject Christschool's criticism in this regard.Here is a rhetorical excercise that helps show this point:"For instance, and I don't mean to pick on Interverbal here, but when I stated that vaccines have caused autism in children (based on information supplied to me by 2 children who had been diagnosed with autism as a result of undergoing vaccines as children) and that there aren't any studies that have been done to look into possible complications from vaccines such as autism, his response wasn't what I would expect from a curious and science based person.""Based on Interverbal's representation of behaviorist's views, there is no need to accumulate empirical data in order to draw a scientific conclusion."Which was not my argument. My argument was there is insufficient evidence to justify a study in the first place. Also, behavior analysts will laugh this off and rightly so. Not because it is a criticism, but because it is a very poor criticism. Many behavior analysts in the field have worked with hundreds of children and adults with autism. None of the ones I have spoken to see evidence of this. Even I, a novice of behavior analyst must have worked with and collected data on over 100 people by now. No where in my experience and in the experience of the people I have spoken to was there a hint that PTSD was or could be an issue. Where is the reason I should take this criticism seriously?"One would think that those interested in human behavior would be curious about how their "therapy" might affect the emotional well being of autistics?"Well, I am "one" and here is what I would think. I think the whole ABA = PTSD is a residue left over from the psychodynamic tradition in autism (and they still say this). They argue that autism is caused by some psychological trauma, leaving the child with autism emotionally more vulnurable to PTSD. I think that this criticism has been adopted by certain parties in the self-advocacy/ally movement in the absence of clear thought on the issue. I think it is telling the some of the more scientifically oriented critics of ABA in this movement do not offer this specific critcism."Noam Chomskey is a professor of linguistics at M.I.T. and perhaps one of the most engaging and prolific intellectuals of the 20th century. In 1971, The New York Review of Books published his essay "The Case Against B.F. Skinner"HYPERLINK "http://www.chomsky.info/articles/19711230.htm". Chomsky makes the case that Skinner's theory of Verbal Behavior isn't really science but a sort of secular dogma (dogma is my interpretation)."I am afraid I must argue against an engaging intellectual. However, first I will note that Christschool confuses the linked Chomsky article and Chomsky's earlier analysis of Skinner's 1957 book "Verbal Behavior".As to the earlier analysis: Some have argued that Chomsky in just 50 pages or so demolishes both Verbal Behavior and behavior analysis in general. I think this is a very fair analysis of these works. Provided one has actually read neither.Skinner, created a classical book of theory, based on arm chair analysis and on observation of his daughters. This technique has a long history. The developmental psychologist Jean Piaget did just the same in his detailed and excellent "The Origins of Intelligence in Children". Chomsky himself, does his fair share of arm chair analysis, as do I.I won't try to break down Chomsky's critcisms here. Some of which are quite sophisticated and good. And some of which have nothing to do with science and a great deal to do with wranglings over terminology (sound familiar?) and musings on just how important free will is.However, if Chomsky's main criticism is a lack of science to back up Skinner, then I would agree this was a very fair criticism in the 70s. But, I respectfully submit to the reader that it is not 1967 anymore. Both the study of verbal behavior and behavior analysis has matured a great deal since the 60s and 70s and both of Chomsky's critiques. I myself was involved as a research assistant in a major review of all existing research in verbal behavior. In our review, we learned some ideas are well supported and some are not.Verbal behavior being an interest of mine, I had a topic a few years back that fascinated me. It was stimulus-stimulus pairing to produce speech in non-verbal children. It made crystal clear sense theoretically. But, as more research came out, it did not support it. As pseudo-scientists shouldn't we have cried some intellectual variant of "This is Sparta!" and brushed off the results? Where was my... where was our.... arrogant and dogamtic dismissal of evidence?Criticism must be able to be given, in the absence of which dogma may creep. However, I have offered my arguments as to why a number of Christschool's criticisms were without merit. I now leave it to the reader to proceed from here. (Source: Interverbal: Reviews of Autism Statements and Research)

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Helping others out

Autism Vox — Sun, 06 Jul 2008 01:56:07 +0100

We hear plenty about other people helping out autistic kids—-here’s a story about some autistic children making blankets for children staying at a Rescue Mission in Youngstown, Ohio. So much we—all and any of us—can all do. Tags: asd, asperger, autism, autism blog, blankets, disabilities blog, disability, Family, family blog, homeless, Parenting, pdd-nos, volunteerShare This (Source: Autism Vox)

England is evil [2]

Whitterer on Autism — Sun, 06 Jul 2008 00:45:00 +0100

After 22 days in England, I grow weary of the mantra. It’s difficult to determine which is more annoying, the ‘England is evil,’ ditty, muttered in glowering tones of impending doom, or the ‘when we are go America?’ question, in the alternative. It’s tempting to climb into the tumble drier and hide, but of course in England domestic appliances are designed for people of diminished stature. I’d be lucky if I could put one foot inside the dinky little machine, manufactured to dry one pair of underpants at a time. It’s a timely reminder of why all British people wear thongs, regardless of age or physique. The national shortage of Goldfish crackers, is of course unforgivable. Curiously, of all the many evils of England, the medieval practice of afternoon teatime at four o’clock is a big hit all round. I fester over the issue as to whether Jammy Dodgers biscuits are available in America, as their little red hearts are so endearing? Sadly, I already know that our arteries shall not be clogged with clotted cream, as strangely it is a culinary extravaganza that hasn’t caught on in the States. 22 days has meant a seamless automatic translation of fries into ‘chips’ without so much as a stutter. Collectively we overcome many new obstacles and learn a great deal. We learn that it is indeed possible to play beach cricket if one employs a neon yellow tennis ball, which appears to be close enough to ‘golden’ to make it acceptable foreplay. We learn that shower grouting can liquefy, but hardens very nicely on warm bodies. I learn that rather than a Rolls Royce being a stately and magnificent tribute to the British car industry, it is really only ‘cute’ and ‘weeny.’ We learn that the current level of hand strength means that it not possible to remove a three pin plug from a wall socket, even if you use a knife. We celebrate tool usage and a narrow escape from an ER visit. Furthermore, British road users prefer foreigners to use the same side of the road as they do, the left. My sons are indifferent, although it’s far more ‘fun’ when we drive the American way by mistake.We learn that small fingers can be persuaded to pick up shells from sandy beaches. We learn that mother’s who lie about Hermit crabs inhabiting English shells are likely to be stoned, one way or another. I’d better nip that habit in the bud before someone becomes really crabby.If you like what you read, send it to someone in 'need.' (Source: Whitterer on Autism)

The wearing of something not so green

Autism Vox — Sat, 05 Jul 2008 20:04:39 +0100

Green Our Vaccines-ista Jenny McCarthy has spoken about her boyfriend, comedian and actor Jim Carrey, as the “autism whisperer.” Carrey was lauded for marching and speaking at the Green Our Vaccines rally and putting on a Green Our Vaccines t-shirt. Autism, as Carrey said, “made me a man“—-certainly enough, it seems, recently to suit up in some quite feminine beach attire, courtesy of an aforementioned friend. (Not that anyone still knows what green vaccines are, not that we need to!) Tags: asd, asperger, autism, autism blog, beach, celebrity blog, cross-dressing, disabilities blog, disability, Family, family blog, jenny mccarthy, jim carrey, malibu, Parenting, pdd-nos, swimsuitShare This (Source: Autism Vox)

Daycare: a lot more than a “perk”

Autism Vox — Sat, 05 Jul 2008 16:01:07 +0100

Daycare. And, afterschool care. The very idea of these have long seemed a luxury to me. There’s basically five people on this planet who’ve provided these for Charlie: My parents, our speech therapist who we’ve known since she was in college, Jim, and me. As my parents live in California (they’re retired and can visit a couple of times a year, for extended periods), and the speech therapist has a full-time job, does Early Intervention, and much else, basically our daycare/afterschool care team has consisted of a total of two people: Jim and me. This is not for lack of trying to have Charlie in such programs. In fact, it was because Charlie was in daycare (an on-site facility at the St. Paul university I was then teaching at) that his developmental delays were noted when he was a year and a couple months old, and that he was diagnosed with autism just as he was turning 2 years old. Seeing Charlie all day long among other children his age made it very clear: He’s different. Jim had a sabbatical when Charlie was 2-3 years old and was the parent who was home for the much of the time that Charlie did his first year of intensive ABA. I took a leave from my job the next year (and ended up eventually resigning from the job). After we moved back to New Jersey, we tried Charlie attending a daycare center for a few months; it was a friendly, very lowkey kind of place, everything worn and a bit sticky. Charlie did ok for a few weeks but mostly ended up walking back and forth in a corner of the playground kicking at the dirt and we took him out, rearranged our schedules, got used to rushing home. A few years later, a neighbor met Charlie twice a week at the bus; this again went sort of well amid some really harried moments, one involving the hard surface of our porch. The one local after-school program for special needs kids that I could find was in a sort of warehouse space, with a bare concrete floor, an aging tv set, and some tables and old couches. The staff were pleasant, but were usually talking to each other when I picked up Charlie, running back and forth in the huge space; all the other kids were sitting quietly at the tables. After a hair-raising phone call from the bus driver when Charlie refused to get off the bus to go into the center (two staff members were unable to get him off; our speech therapist friend was able to get to the center before me and took him home in her own car), we knew that was the end of Charlie at that center. At this point, for Charlie to be in an after-school program with kids his age, we’d have to find a center that would take a child who needs (at the age of 11) constant 1:1 care, find and hire our own aide. Working out schedules (and driving home really fast) seems to be the better, or the pretty much workable, option. I know we’re hardly alone among parents in struggling to find decent, affordable daycare. Unlike other children, Charlie will always need someone to meet his bus and supervise him—this is one area that he can only so independent in. An article in the July 5th New York Times about Google’s “fumble” in providing daycare to its employees—-for one thing, a plan to raise the price from around $33,000 to $57,000—reiterated how important, and emotional, an issue care for one’s children can be. Much of the concerns of the Google parents concerning daycare are far from anything I’ve had to worry about for Charlie (such as making sure the “hot kiddie philosophy of the moment,” Reggio Emilia, is used) but talk about waiting lists with hundreds of names in front of your child’s rings a too familiar bell. And the stress and strain of parents wanting to give their kids that good foundation is more than familiar to me, a long-time veteran of Early Intervention in manifold shapes and therapies. I’m more than glad I’ve been able to spend so much time with Charlie day in and day out; I’ve been able to teach him lots of things and I’ve learned a lot in the effort. He’s my trusty compantion, my good friend. But it seems something more than funny that something so essential (at least to this working mother)—-a safe and friendly place to leave a child so you can work (to pay for the daycare, for one thing)—is talked about as a “perk” and even a “luxury.” Tags: after school, asd, asperger, autism, autism blog, daycare, disabilities blog, disability, Family, family blog, father, google, mother, Parenting, pdd-nos, Work, working motherShare This (Source: Autism Vox)

England is evil

Whitterer on Autism — Sat, 05 Jul 2008 15:29:00 +0100

Don’t get me wrong, I’m delighted that he feels able to express his viewpoint verbally. I’d just prefer it if he could be a little more circumspect, especially whilst we happen to be in England. I’m sympathetic to many of his complaints, that the milkshakes are too small and that weather is too big, but loud mouthed Americans are just to much of a cliché, even for him. Handy travel hint of the day – to ensure that your suitcases are fresh for next year, tuck a tumble drier sheet inside before storage. Take care to assess whether or not tumble drier sheets should be eliminated from your life style, along with the tumble drier to reduce your carbon footprint on the planet. Should you suffer the misfortune of someone vomiting in your suitcase, admit defeat and chuck away the suitcase, carbon footprint be damned. Be grateful that your brain torture has ceased and that the mysterious stench is no longer mysterious. Don’t forget to thank the thoughtful child that shut the suitcase after use.Normal service shall be resumed as soon as humanly possible.If you like what you read, send it to someone in 'need.' (Source: Whitterer on Autism)

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Last day

Susan's Blog — Sat, 05 Jul 2008 09:36:00 +0100

Healed by love and sleepAwakened to your voice that told you things.I marvel at how you comfort yourselfI wonder if you sat down with me for moreI know you don't want to leave this place of softest blues and spiky greens,Crows that argue and rabbits that chew, stare, and think, maybe.This goodbye feels like more to meA familiar maw of sadness that yawned open as the day closed.We're going.You're going.I drink scalding coffee, swallow down a fresh blooming painand listen to you whispering sudden cool laughter bubbles in your mouthAnd a symphony of birds outsideOn our last day. (Source: Susan's Blog)

First (and big) impressions

Autism Vox — Sat, 05 Jul 2008 07:43:02 +0100

A new study published in Current Biology suggests that what we “see” internally—in the mind’s eye—can directly influence our visual perception. From yesterday’s Science Daily: It is well known that a powerful perceptual experience can change the way a person sees things later. Just think of what can happen if you discover an unwanted pest in your kitchen, such as a mouse. Suddenly you see mice in every dust ball and dark corner—or think you do. Is it possible that imagining something, just once, might also change how you perceive things? “You might think you need to imagine something 10 times or 100 times before it has an impact,” says Frank Tong, associate professor of psychology and co-author of the study. “Our results show that even a single instance of imagery can tilt how you see the world one way or another, dramatically, if the conditions are right.” With Charlie, it’s so often the first of something he’s seen or eaten or heard or just experienced that becomes what he expects every time. When he still watched Barney videos, we bought him ones in which one boy named Michael was around 8 and then others in which Michael was an adolescent, and another in which Michael looked like he must be dancing to “Hey Mr. Knickerbocker” between semesters at college. Charlie insisted on Michael at 8 (in “Shapes and Colors”); it’s the songs from that video, and from “Sleepytime Songs” (Michael was maybe 10) that Charlie still sings from time to time. The therapists he talks most about are the original five are the original five and I once set Charlie at ease about a new speech therapist in New Jersey by saying “she’s just like Tara.” Charlie, one could say, is faithful to the archetype, and when it’s not that first and original one, major upsetment can occur, from major cognitive dissonance, when the reality does not match with what’s stored up in his mind’s eye. Tags: asd, asperger, autism, autism blog, brain, disabilities blog, disability, eye, Family, family blog, imagination, mind, Neuroscience, Parenting, pdd-nos, perceptionShare This (Source: Autism Vox)

Ottawa's unfinished autism business

Facing Autism in New Brunswick — Sat, 05 Jul 2008 04:00:00 +0100

Autism should not be a partisan issue.Here in New Brunswick progress has been made under the former Conservative government of Bernard Lord and the current Liberal government of Shawn Graham. It is more difficult to say the same of the situation in Ottawa where the separatist Bloc Québécois and the Conservative government of Stephen Harper combined to defeat Charlottetown Liberal MP Shawn Murphy's Private Members Bill C-304 which would have provided a real National Autism Treatment Strategy to ensure adequate financing and ABA/IEBI treatment for Canada's autistic children whether they had the good fortune to reside in a province sitting on large oil reserves or not.The rationale for defeating Bill C-304 offered by the Harper Conservative party - that health care is a matter within provincial legislative jurisdiction - ignores the reality that we already have federal health care legislation - the very Canada Health Act that Bill C-304 would have amended. If the Canada Health Act itself can exist, whether by some constitutional basis for federal health care competency; or by the cooperation, compassion and common sense of Canadians then so too can an amendment to that Act. Even weaker is the argument, often advanced by the Harper government's offical autism dad, Mike Lake, that:If this Bill were to pass, autism would be the one and only disorder or disease named in the Canada Health Act. Cancer is not named. Neither is diabetes or cardiovascular disease. Why autism and not these? Why not Down Syndrome? Why not Schizophrenia?Under the Canada Health Act, the provinces are clearly responsible for decisions on which medical treatments they will fund. If we are to maintain the integrity of the Act, only the provinces can make those decisions.To answer the first question the fact that autism would be the first to be named should be irrelevant. The need for a national effort to address Canada's autism crisis is clear. The Conservative government acknowledged that fact when it adopted Fredericton MP Andy Scott' s motion calling for a National Autism Strategy. While recognizing the need for such a strategy the Harper government has steadfastly refused to put any teeth in it. If the need for a National Strategy exists to address other disorders and diseases they can be looked at on case by case basis. There is no reason not to name autism now because other disorders and diseases may also have to be considered. Each can be examined on a case by case basis as required.Provinces across Canada have begun financing, to the extent they are capable, the ABA that has been acknowledged, most recently (October 29, 2007) by the American Academy of Pediatrics, as the most evidence based effective treatment for autism:The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40Even Mr Lake has acknowledged the effectiveness of ABA in treating autism; he just doesn't seem to understand that not all provinces have the finances to properly fund ABA for all autistic children:In my opinion, it is completely unacceptable for any province not to fund Applied Behavioural Analysis (ABA) for those who need it. If voters feel as strongly as I do about this, they must let their provincial governments know and then hold them accountable at election time.As for the integrity of the Act what is that? An Act is established to give effect to the will of the people through their elected representatives on a given matter. They can change the scheme, structure, or "integrity" of the Act if that reflects the will of the people at that time. If Canadians want to provide financing for ABA treatment for autism, and judging by the number of provinces that provide some level of ABA treatment funding they do, then the only challenge for those provinces not as well off, is to find the money to adequately fund the treatment.The last I checked the federal government has no qualms about taking money, in the form of taxes, from the pockets of Canadian families wherever they live. They should have no qualms about spending some of that money to help provide effective ABA treatment for persons with autism.Mike Lake's autistic son deserves the opportunity to access the ABA treatment funded by oil rich Alberta. So too does Joe Smith's son in PEI, Jacques LeBlanc's son in Quebec and Joe Kowalchuck's son in Saskatchewan. It is long past time that the Harper government ceased making a mockery of its commitment to a National Autism Strategy and amended the Canada Health Act as set out in Shawn Murphy's Bill C-304. There is no good reason not to.C-304First Session, Thirty-ninth Parliament,55 Elizabeth II, 2006HOUSE OF COMMONS OF CANADABILL C-304_____________________________________________FIRST READING, MAY 17, 2006_____________________________________________MR. MURPHY (Charlottetown)1st Session, 39th Parliament,55 Elizabeth II, 2006HOUSE OF COMMONS OF CANADABILL C-304An Act to provide for the development of anational strategy for the treatment ofautism and to amend the Canada HealthActHer Majesty, by and with the advice andconsent of the Senate and House of Commonsof Canada, enacts as follows:SHORT TITLE1. This Act may be cited as the NationalStrategy for the Treatment of Autism Act.NATIONAL CONFERENCE2. The Minister of Health shall, beforeDecember 31, 2006, convene a conference ofall provincial and territorial ministers responsiblefor health for the purpose of workingtogether to develop a national strategy for thetreatment of autism. The Minister shall, beforeDecember 31, 2007, table a report in bothHouses of Parliament specifying a plan of actiondeveloped in collaboration with the provincialand territorial ministers for the purpose ofimplementing that strategy.AMENDMENTS TO THE CANADAHEALTH ACT3. Section 2 of the Canada Health Act isrenumbered as subsection 2(1) and isamended by adding the following:(2) For the purposes of this Act, servicesthat are medically necessary or required underthis Act include Applied Behavioural Analysis(ABA) and Intensive Behavioural Intervention(IBI) for persons suffering from Autism SpectrumDisorder.autism (Source: Facing Autism in New Brunswick)

(too) long weekend

Autism Vox — Sat, 05 Jul 2008 00:58:17 +0100

“School tomorrow!” Charlie told me with his best grin this morning. He’d slept in, had breakfast around 11, practiced cello with a little coaxing. His internal clock is ticking away: Two days off and it tells him, that was the weekend, back to school. Imagine if everyone preferred to go without long weekends and always have that five-day workweek, no complaints. Off to find some rides and maybe some fireworks, if the rain allows……. Tags: asd, asperger, autism, autism blog, clock, disabilities blog, disability, Family, family blog, independence day, july fourth, kids, kids blog, Parenting, pdd-nos, Technology, Time, weekendShare This (Source: Autism Vox)

Sanctioned [46]

neurodiversity weblog — Sat, 05 Jul 2008 00:37:09 +0100

The following Order was issued this afternoon by Magistrate Judge James R. Muirhead of the United States District Court for the District of New Hampshire in Case No. 1:08-mc-00013-JM. UNITED STATES DISTRICT COURT DISTRICT OF NEW HAMPSHIRE 1:08-MC-13 Lisa Sykes, et al., Plaintiffs, v. Bayer Corporation, Defendant ORDER Clifford J. Shoemaker, Shoemaker & Associates, 9711 Meadowlark Road, Vienna, Virginia was ordered to show cause why he should not be sanctioned under Fed. R. Civ. P. 11 with respect to a subpoena duces tecum served on a non-party to a case then pending in the Eastern District of Virginia. 1 The time allotted to Shoemaker to show cause expired but he was subsequently given additional time. Background Clifford Shoemaker, Esq. was counsel to the plaintiff in the underlying case. In the underlying case the claim was that the plaintiff-child developed neuro-developmental disorders from high mercury exposure as a result of exposure to defendant’s medicine in utero. Shoemaker is a 1973 law school graduate who indicates on his website that he has focused his attention on an alleged mercury-created autism epidemic. He claims to have “tried cases in federal district courts all over the country.” Ms. Seidel was a non-party to the Sykes’ suit. Ms. Seidel maintains a website, www.neurodiversity.com, on which she posts articles she and others have written about the controversy about whether mercury has or has not created an autism epidemic. Shortly after posting an article on several fees Mr. Shoemaker obtained in various Vaccine Injury Compensation Program claims, Shoemaker served Ms. Seidel with the subpoena at issue. The subpoena, as Ms. Seidel correctly summarizes: commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com” – including but not limited to material mentioning the plaintiffs – and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.” The subpoena is very broad. Ms. Seidel filed a timely and well-prepared motion to quash. Shoemaker interposed no objection. The record provides no information as to whether Shoemaker provided notice of the subpoenaed deposition to counsel for defendants. I quashed the subpoena and ordered Mr. Shoemaker to show cause why he should not be sanctioned under Fed. R. Civ. P. 11. He has responded to that Order. Ms. Seidel has responded to his response. Discussion (T)he risks attendant to the misuse of the subpoena power are great . . .. “Moreover, the injury resulting from attorney misuse of the subpoena power is not limited to the harm it inflicts upon the parties. Rather, misuse of the subpoena power also compromises the integrity of the court’s processes.” (citation omitted). Spencer v. Steinman, 1999 WL 33957391, *2 (E.D.Pa.). Fed. R. Civ. P. 45(a)(1) requires an attorney to take steps to avoid imposing an undue burden or expense on a subpoenaed non-party. Fed. R. Civ. P. 11(b) requires an attorney who signs or later advocates a court paper to refrain from presenting it for any improper purpose such as to harass. The subpoena which I have attached to this order is breathtakingly broad. Mr. Shoemaker made no attempt to avoid imposing an undue burden or expense on Ms. Seidel. To the contrary, I find that he sought to burden her by requiring production of every scrap of paper related to autism, her web site, her tax returns, and her communications with the government. He improperly imposes a requirement to create documents, e.g., a list of “names of persons helping, paying or facilitating . . . these endeavors.” The documentation sought is exhaustive. Shoemaker seeks to justify the subpoena by allegations that Seidel is not “a mere mother of an autistic child and housewife,” but a co-conspirator under 42 U.S.C. §1985 with her husband or “the defendant (Bayer) or by some organization dedicated to harassing this plaintiff (Ms. Sykes) and her witness . . .” Shoemaker’s claim that Ms. Seidel was the “leader of a conspiracy to obstruct justice . . .” is unsupported by any facts. It is clear that she has openly and extensively exercised her First Amendment right to speak out on the issue. Shoemaker certainly has the right to disagree with her, but he has no right to misuse the process to abuse her. Shoemaker has not offered a shred of evidence to support his speculations. He has, he says, had his suspicions aroused because she has so much information. Clearly he is unfamiliar with the extent of the information which a highly-competent librarian like Ms. Seidel can, and did, accumulate. If Shoemaker wanted to know if Ms. Seidel was in part supported by or provided information by Bayer, he could have inquired of Bayer or limited the Seidel subpoena to that information. Instead he issued the subpoena calling for production of documents and a deposition on the day before he stipulated to dismiss the underlying suit with prejudice. His failure to withdraw the subpoena when he clearly knew that suit was over is telling about his motives. His efforts to vilify and demean Ms. Seidel are unwarranted and unseemly. Clearly the litigants are passionate about the causative issues surrounding autism. Nothing in this order is intended to indicate that this court has any view as to who is right on the autism issues. What the court does have views about is the impropriety of misuse of a subpoena. 2 Shoemaker could make an argument for discovery from Seidel to attempt to establish that his defendants improperly used her and her web site to impact witnesses in the underlying case. That might meet Rule 26‘s smell test. However, he has no right: (1) to serve a grossly overly broad subpoena intended to harass; (2) to go on a “fishing trip” for anything to support a new suit for defamation or for a §1985(3) conspiracy; and (3) to fail his duties under Rule 45(c)(1). Most of the documents sought have no arguable relevance to the underlying case and were not likely to lead to admissible evidence. If Ms. Sykes or the Geiers believe they have a cause of action against Ms. Seidel, they have an avenue to pursue such a claim. What they and Shoemaker can not do is abuse the subpoena power in the Sykes v. Bayer case. I find that Clifford Shoemaker violated Fed. R. Civ. P. 11(b)(1) and Rule 45(c)(1). The 11(b)(1) violation may also violate Virginia’s Rules of Professional Conduct which provide in part: (1) Preamble: A lawyer should use the law’s procedures only for legitimate purposes and not to harass or intimidate others. (2) Rule 3.1: A lawyer shall not assert or controvert an issue therein unless there is a basis for doing so which is not frivolous . . . Comment [1]. The advocate has a duty to use legal procedure for the fullest benefit of the client’s cause, but also a duty not to abuse legal procedure. (emphasis added). Clifford J. Shoemaker’s action is an abuse of legal process, a waste of judicial resources and an unnecessary waste of the time and expense to the purported deponent. The Clerk of Court is directed to forward a certified copy of this order, the motion to quash, the show cause order, and the response of Shoemaker and Seidel to the appropriate professional conduct committee of the Virginia State Bar in order that it may be made aware of Clifford J. Shoemaker’s conduct and so that those authorities may take whatever action they deem appropriate. As a sanction from this court, Clifford J. Shoemaker is ordered to attend within three months, a continuing legal education program on ethics and on the discovery rules in the Federal Rules of Civil Procedure. He is ordered to file a certification of completion of the programs. SO ORDERED. James R. Muirhead United States Magistrate Judge June 23, 2008 Footnotes 1. The case, Sykes v. Bayer Pharmaceuticals Corporation, et al., 3:07 cv 660 (E.d. Va. 2007) was dismissed with prejudice upon a voluntary stipulation of dismissal. 2. Shoemaker also issued a simultaneous abusive subpoena to a Massachusetts physician with views contrary to his effort. (Source: neurodiversity weblog)

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Peer review in the hub

Interverbal: Reviews of Autism Statements and Research — Fri, 04 Jul 2008 20:55:00 +0100

Christschool and I seem to be getting in our fair share of disagreements these days.Recently he critiqued and old article on punishment that I had done. I responded here, with a rebuttal and some criticisms of my own. Our main bone of contention was the defintion of torture. In response to the article and to our subsequent discussion, Christschool retitled his article, it now begins in part with "Interverbal defends Matthew Israel". A hand grenade tossed into a debate, if ever there was one.Also, in the comments here on my rebuttal, the topic began to shift from whether physical aversives = torture, to the problems of behavior analysis. This has led to a new article from Christschool that addresses some of the broader problems he sees in behavior analysis. It also features quotes from your truly to help prove the point, surprise, surprise.I think, this sort of issue frightens some of our fellow bloggers. They might worry that here are two Hub bloggers having a serious disasgreement. Some might wish us to drop the issue and focus on shared points of advocacy. However, I truly think this would be the wrong approach. Any view can become dogmatic. And I would argue that if we fail to gruard agaisnt this, dogma, may creep in.I would also propose that what makes us different here at the hub, is not just a more positive view of autism (something unbelievable to other parties), but that we allow ourselves to dissent if we see the need. I directly contrast this with other options such as the Age of Autism Blog.Don't let Christschool's and my disagreement frighten you merely because we disagree. It is a very serious debate, but it may help both ourselves and our readers better understand the issues at hand. It is also healthy for the Hub itself. The process of peer review which the hub provides, although casual, is also excellent. Here are statisticians, and geneticists, and professionals, and self-advocates, and parents all come together. But peer review only functions when it is free. And to be free, dissent must be able to be given in a fearless manner.Some, readers may wonder why I bother to write such a disclaimer (I have already done so before after all), but I would mention that the Hub occasionly picks up new members and also the are always readers who are new to the hub. And even for the older members, it may serve as a healthy reminder. And I hope the reader keeps this in mind as s/he reads Christschool and myself.My reply to Christschool's latest article will follow in a day or so. (Source: Interverbal: Reviews of Autism Statements and Research)

Boys and subways

Autism Vox — Fri, 04 Jul 2008 20:04:06 +0100

The Boys and the Subway is a picture-blog-essay-story by artist Christoph Neumann about a dad, two boys, and the NYC subway—one of Charlie’s (and Jim’s) very favorite places. It’s got letters and colored circles, and numbers, and trains that go in tunnels underground! and there are newstands in some of the stations to get sodas and snacks! and if you don’t mind the inferno-like heat in the summer, some really pungent smells, a few flickers of a not-too-small animal’s tale under the tracks, the sounds of the erhu or a steel drum, random trash, mechanical noises: It is the place to be. Wasn’t it a man named Charlie who couldn’t stop riding the MTA? Tags: asd, asperger, autism, autism blog, disabilities blog, Family, family blog, kingston trio, mta, new york, Parenting, pdd-nos, subway, transportation disabilityShare This (Source: Autism Vox)

Watch your words when the subject is autism, and vaccines

Autism Vox — Fri, 04 Jul 2008 16:51:40 +0100

Last Sunday a group of experts on mitochondrial disorders met for a meeting in Indianapolis to discuss the case of Hannah Poling, whose underlying mitochondrial disorder was found to have been aggravated by vaccines, after which she developed symptoms of autism. A June 30th New York Times article announced the meeting and noted the case of Hannah Poling and of a 6-year-old Colorado girl who also had a mitochondrial disorder and who, after receiving the FluMist vaccine, had to be hospitalized and died. Both the NYTimes article and an ABC News report did not make it sufficiently clear that the 6-year-old girl did not have autism. A July 4th story in the Commercial-News (Danville, IL) reports on the Indianapolis meeting, and almost makes it seem that the Colorado child had autism, as she did not. Right now, [Dr. Robert] Elghammer [a pediatrician and DAN! practitioner] believes strongly that the routine vaccinations young children receive may be responsible for the increase in autism. Elghammer pointed to a story in the June 30 Chicago Tribune about the link between autism and vaccines. “Studies have failed to show any link between vaccines and autism,” the Tribune story said, “but many parents are convinced that the vaccines — usually given around the time autism becomes apparent — are to blame.” But recent cases involving a 9-year-old girl who developed autism following numerous vaccinations and a 6-year-old who died after a FluMist vaccine led experts to speculate that some link may exist. The notion that vaccines or something in vaccines is linked to autism is a topic of much (and often heated) debate—one has got to be very careful, and precise, with the language one uses. Tags: asd, asperger, autism, autism blog, disabilities blog, disability, Family, family blog, flu, flumist, mercury, mitochondrial disorder, Parenting, pdd-nos, VaccinesShare This (Source: Autism Vox)

Happy fourth of july

Susan's Blog — Fri, 04 Jul 2008 11:40:00 +0100

...All men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.-Thomas Jefferson, July 4, 1776Here's to life, liberty, and the pursuit of happiness!See my Tabblo> (Source: Susan's Blog)

Random photo

Aspie Home-Education — Fri, 04 Jul 2008 09:07:00 +0100

(Source: Aspie Home-Education)

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Schools out

Aspie Home-Education — Fri, 04 Jul 2008 08:51:00 +0100

From The Star: "More and more parents are choosing not to send their children to school. [...] you won't find a desk, a blackboard or even any exercise-books in their household. The children don't have a set curriculum, lessons or homework. They simply learn through play and set their own agenda guided by their interests."FACTFILEContrary to popular belief it is both legal and reasonable to educate your child at home. It's a growing phenomenon - last year 50,000 kids were home educated, that's a 17% increase on 2006.Bullying, poor educational standards, religion, special needs and school choice are all common reasons for home educating. It can be a natural choice for parents who want to continue their child's early learning and see no reason to stop when the child reaches the age of five. The method of learning is entirely personal and parents can use any approach considered suitable.A UK support website for those practising home education education-otherwise advises: "You do not need to 'know everything' - a more important skill these days, with the ever increasing volume of facts which changes and soon becomes out of date, is learning how to learn, how to think, how to find information and where to look."Read it here. (Source: Aspie Home-Education)

The meaning of independence

Autism Vox — Fri, 04 Jul 2008 07:00:34 +0100

All three of us were born in the USA: Jim on the East coast, me out West, and Charlie inbetween in a city on the Mississippi. Happy 4th of July (if you’re American)—-though this particular holiday isn’t alwyas the easiest for autistic individuals. Fireworks are loud and it seems that every town here in New Jersey has their own special fireworks display, booming and whistling over one’s house. Add the time off from already shorter days of summer school and standing on a hot sidewalk under the hot sun to see floats or marching bands (more loud noises): It’s enough to make one want to forget about why there’s a holiday at all and what the holiday is about—-and even that brings mixed feelings to the parent of a disabled child. July 4th is meant to celebrate independence, a word that always gives me pause; a word I think about every day. How independent can and will Charlie be? I more than suspect he’ll need a job coach to help him in his work (assuming he can get a job). He’ll need to live in some sort of supported living community, perhaps with roommates and a careworker or in a group home, and perhaps for some time with us as there’s a shortage of housing for disabled adults here in New Jersey. Charlie struggles to do simple arithmetic using a calculator; he’ll need help handling money and to take care of himself. Which brings me to a rather personal, but practical, subject. Fingernails, and toenails. I cut Charlie’s and the fact that I can do this when he’s awake, without accidentally clipping him on the fingertip, has been a minor triumph. Until Charlie was about 6, I was only able to do this when he asleep. I’d turn on the lights (a bright light; you need to see what you’re doing when attempting a fast fingernail clip on a sleeping child) and strain my shoulders and arms, in an effort to be at the right angle. It was nerve-wracking, to say the least, and completely necessary. A long-nailed child can inflict a painful scratch on himself, on a teacher, on a parent. Charlie just could not sit still to have his nails clipped and attempts to hold onto him made the whole operation worse. The nail cutter—a small tool that portended a big pinch—may well have seemed like something approaching a torture device, on a par with the curved pick at the dentist. I don’t quite remember how we taught Charlie to sit to have his fingernails and toenails cut. I suspect someone held his other hand or foot, everyone offered smiles and warm praise, and someone provided him with his favorite crackers. Over time, we were able to complete the task with fewer and fewer crackers and now Charlie sits (giggling and wriggling a bit) while I clip, and has told me on occasion that “I need help!”, and shown me a hangnail that he’s pulling at. It’s a small piece of “independence,” I know. I do think I’ll be able eventually to teach Charlie to do it himself, though maybe rather jaggedly. I have to wonder: Will he really be able to manage the little clipper? Will he remember to do it? To ask for help when he needs it? And maybe the last question is the main one: How independent are many of us, anyways? My mother-in-law has long feared to do anything on her own; she doesn’t even pick up the phone, but waits for someone else to do it, and rarely ventures outside the house without her husband. My 102-year-old grandmother, Ngin Ngin, has always lived among others, many others; after her children had grown up and moved out and my grandfather, Yeh Yeh, had died in 1975, there were always families newly arrived from China in her house, always elderly women—”old friends,” really distant relatives by marriage—sitting at the table with us. I can’t say that Ngin Ngin was “totally independent”: Not knowing English, or how to read and write any language, she was limited and has lived all of her life (since she came to the US in the 1920’s) in Oakland’s Chinatown. Maybe it’s not independence we need to be thinking and planning so much for, as about acknowledging how dependent we are on each other, how we need to live in community. I’ve written before about a movie called The Key of G, which …..follows Gannet, a charismatic 22-year-old with physical and developmental disabilities, as he leaves his mother’s home to share an apartment with a close-knit group of artists and musicians who support him, not only as paid caregivers, but also as friends. Together they create a uniquely successful model of supported living, and a compelling alternative to institutionalized care. The film—and Gannet most of all—are compelling to watch. And if the idea of a “uniquely successful model of supported living” that offers a real “alternative to institutionalized care” seems overly idealistic —– remember that it’s July 4th and that, once upon a time, saying that all are “endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness” sounded, indeed, idealistic and rather impossible. Just as “cutting Charlie’s fingernails while he’s wide awake” once did. Tags: aging, asd, asperger, autism, autism blog, disabilities blog, disability, Family, family blog, independence, july 4th, key of g, Parenting, pdd-nos, philadelphia, supported livingShare This (Source: Autism Vox)

Jonathan howard runs the dream and raises autism awareness in ottawa

Facing Autism in New Brunswick — Fri, 04 Jul 2008 04:00:00 +0100

Jonathan Howard Meets Liberal Leader Stéphane DionPhoto from Run the Dream - Jonathan's BlogJonathan Howard Runs the Dream across Canada to raise funds to support people with autism and raise autism awareness. He began in March in St. John's, Newfoundland and hit Fredericton, New Brunswick where I met him on June 5. I had the opportunity to talk with Jonathan at that time and I was very impressed. He is a sincere and dedicated young man of 24 who has committed the better part of a year of his life to help people with autism.Jonathan has met, and raised autism awareness, with provincial premiers along the way. This week, as detailed in his hometown journal, The Mississauga News, Jonathan arrived at Ottawa where he was joined on his run by Kathleen Provost, executive director, Autism Society Canada, and Senator Jim Munson. Jonathan also met with federal Liberal Leader Stéphane Dion. Jonathan reports on his blog that he had extended an invitation to meet with Prime Minister Stephen Harper. Jonathan, very diplomatically, states:For those wondering- What about the Prime Minister Stephen Harper? The invitation was sent a week ago and I am still awaiting a response. Lets Hope!Far be it from me to challenge Jonathan in the Hope department. If anyone can get Mr. Harper to wake up to the realities of autism in Canada it just might be him.Keep up the good work Jonathan!autism (Source: Facing Autism in New Brunswick)

Hot summer autism topics

Autism Vox — Thu, 03 Jul 2008 22:00:28 +0100

Our very non-sleepy summer continues, on the homefront (Charlie’s good, though he looked a little resigned when told he has no school today and Friday, due to the 4th of July) and on the autism front: Buses that don’t know where they’re going, an autistic boy found walking after the highway—and some good news too. The first two items make me more grateful than ever that Charlie attends summer school in our town, at the middle school he’ll be going to in September, with the same teacher he’ll have, and on a bus provided by the county’s education commission. Every year we’ve considered sending Charlie to camp: It would have to be daycamp the first time (for one thing, I can only stand to worry so much; Charlie not having that much language, he wouldn’t be able to tell us what’s going on if something “untoward” went on). Some programs we’ve looked at are at the same times as his summer school, which he needs to attend and likes; some programs are in August when we will be at the beach. I made some inquiries about a day program in late August when we’ll be back and was told by friends that the pace is really slow; am not sure that would be the best thing for Charlie, who does well when he’s active and kept busy. Other families have noted good experiences when they’ve hired an aide and sent a child to “regular” camp and perhaps (perhaps) this might be a possibility. Thoughts of independence, thoughts of growing up, “the usual” in autism discussions—and since it’s the early 21st century when autism is getting a lot of attention and the prevalence rate has greatly increased, looks like this post will mention….vaccines. Or rather, litigation about vaccines; last summer indeed saw the first hearing in vaccine court, which was aout the first of 4,800 claims filed by parents of autistic children who believe that their child’s autism was caused by the U.S. government’s vaccine program. Back in June of 2007, the case of Michelle Cedillo was heard; the case of Hannah Poling was to be the second case and opened up discussion about mitochondrial disorders, vaccines and autism; closing statements in the cases of William Mead and Jordan King were heard in June. Nonetheless, all is not quiet in the vaccine court: As Sullivan wrote today on Left Brain/Right Brain, the Court of Federal Claims holds a “Judicial Conference” every year, in which the Special Masters and lawyers discuss the system. This year’s conference was to involve “panel discussions of general vaccine policy issues and of the information underpinning vaccine compensation decisions.” I quote from what Sullivan cites: The first panel is tentatively titled “Vaccines: Balancing Benefits with Parental Concerns (the autism issue?).” It will be moderated by Sharyl Attkisson, a reporter with CBS Evening News. The panelists will be Arthur Allen, author of “Vaccines”; David Kirby, author of “Evidence of Harm”; Dr. Ed Marcuse, Professor of Pediatrics at the University of Washington, who has served as a member and Chair of HHS’ National Vaccine Advisory Committee, and as a member of CDC’s Advisory Committee on Immunization Practices; and, Dr. Bernadine Healy, Health Editor, US News and World Report and former Director of the National Institutes of Health. There is no doubt that this discussion will be lively and informative. The session has been cancelled, as announced in a letter. Notable about this first (and cancelled) panel is that three of the panelists (Attkisson, Allen, Kirby) are journalists. Dr. Healy’s views on vaccines have been, of late, made known through articles in the popular media, in US News and World Report and an interview with Ms. Attkisson on CBS News. Dr. Marcuse is a professor of Pediatrics and has (like Dr. Healy) served in various capacities for major government health agencies. Here’s (again via Left Brain/Right Brain ) the topics of the second two panels, whose participants include judges, lawyers, doctors, scientists, and professors of public health. The second panel will utilize some of the information from the first discussion and apply it when discussing the effects of decisions under the Vaccine Compensation Program. The title for the second panel is “Vaccine Compensation Under the Act: A Mix of Science and Policy?” This panel will be moderated by Senior Judge Loren A. Smith, who was the Chief Judge when the Vaccine Program first began at the court in 1988. The panelists will be Kevin Conway, a petitioners’ counsel since the Program’s inception; Randolph Moss, a partner at WilmerHale and co-chair of the firms’ Government and Regulatory Litigation Group, who represents vaccine manufacturers; Dr. Paul Offit, the Chief of Infectious Diseases at the Children’s Hospital of Philadelphia, a professor of pediatrics at the University of Pennsylvania School of Medicine, and the co-inventor of the rotavirus vaccine, RotaTeq; Marguerite Wilner, former Vice-Chair of the Advisory Commission on Childhood Vaccines; and Ruth J. Katz, Dean of the School of Public Health at The George Washington University. Previously, Dean Katz served as counsel to the Subcommittee on Health and the Environment in the U.S. House of Representative (then chaired by Congressman Henry A. Waxman), where she helped develop the National Vaccine Act. With these different perspectives, this promises to be an interesting discussion. The third panel is to be an “ethics” panel. Judge Mary Ellen Coster Williams will moderate a discussion regarding ethical issues involving expert witnesses. The panel will include Special Master Denise Vowel and a law professor, Joseph Sanders from the University of Houston. With the extensive involvement of experts in vaccine litigation, this panel discussion should provide important information and considerations to all vaccine practitioners. Why the first panel was cancelled, I can’t further speculate; at least one participant writes a bit wistfully about the cancellation of the panel (he was to be on it). I won’t be surprised if there are called of conspiracy from various quarters: The vaccine-autism hypothesis, however much not backed up by science, is a hot topic (as suggested by this image of a very hot place in reference to autism and vaccines, and discussed by one science blogger). Since it’s summer, keeping cool seems a very good strategy. Tags: asd, asperger, autism, autism blog, bernardine healy, court, david kirby, disabilities blog, disability, Family, family blog, federal government, journalism, Media, Parenting, pdd-nos, summer, VaccinesShare This (Source: Autism Vox)

Sanctioned [45]

neurodiversity weblog — Thu, 03 Jul 2008 21:35:02 +0100

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Finding family

NTs Are Weird — Thu, 03 Jul 2008 18:07:11 +0100

My girlfriend and I recently returned from a two week roadtrip, including several days at Autreat. I’ve been going to Autreat for several years. I couldn’t quite explain why I enjoy it so much - there is certainly imperfections about it, like any gathering, but I finally figured out that it must be the group of people that attend and how comfortable I feel in that group. My girlfriend, who attended for the first time this year, also enjoyed herself, saying that she really felt part of a group of people for the first time in her life. We spent a lot of time talking about it on the way home from Autreat, trying to figure out the right words to describe it. I still don’t know them, but I think the words “family reunion” come closest to describing what it is like to spend a few days with your own people! It was a lot of fun seeing friends again. It was also truly a lot of fun to see my girlfriend experience what it is like to be in a place where people are generally accepted as they are. I forgot what a unique feeling that can be. Oh, did I mention that my girlfriend and I are still in love after living with each other for two weeks continually? We’re taking that as a good sign! (Source: NTs Are Weird)

A graduation and a song

Autism Vox — Thu, 03 Jul 2008 16:37:03 +0100

19-year-old Erik Weber has graduated from Grossmont College with an associate’s degree and plans to attend Point Loma Nazarene University to get his bachelor’s degree, today’s Sign On San Diego reports. Weber was diagnosed with autism when he was 3 years old and was not really verbal until he was 8. His mother, Sandy Weber, attended college classes with him: Erik and Sandy, 60, started with physical-education classes – ballroom dance, weight training, tai chi – before moving on to academics. Sometimes she would be in the same room as Erik; sometimes she would be in another part of the building taking her own class. Sandy says she wanted to make him feel comfortable because change can be unnerving for autistic people. “It’s about creating a comfort zone and transitioning to a different environment,” she said. Soon it became apparent Erik could handle classes on his own, with the help of large-print and audio books. Congrats to Erik and his mother, and to 9-year-old David Militello, who recently sang “Ben” by the Jackson Five on America’s Got Talent. Two talents to shout and sing about. Tags: america's got talent, asd, asperger, autism, autism blog, College, disabilities blog, disability, Family, family blog, jackson five, Music, Parenting, pdd-nos, san diego, singingShare This (Source: Autism Vox)

This is us

Aspie Home-Education — Thu, 03 Jul 2008 15:00:00 +0100

(Source: Aspie Home-Education)

Autism's war and the notion of recovery

Everyone's Blog Posts - Asperger's Syndrome — Thu, 03 Jul 2008 11:33:30 +0100

As I have noted in previous posts, I have begun to notice a rift (or two) in the field of autism research and advocacy. There are those who would consider themselves to be engaged in a war on autism's wrath and it's evil doings (Ex-Playboy Gal McCarthy) and those who advocate for the neurodiversity movement, a movement which sees those with ASDs as different/eccentric and merely requiring acceptance from the neurotypical world. In the neurodiversity movement, "recovery" is an insult. I definitely fall somewhere on the middle of this ideological spectrum. Autism Vox, a college professor in New Jersey who has a son on the autistic spectrum, maintains a blog that hits home for me. She recently wrote the following about her son, Charlie: Charlie was around 5 when I started to let go of “recovery” as a goal. When I thought about “recovering” Charlie from autism, I realized that I wasn’t thinking so much about what Charlie needed as what I thought I had to do as a parent. I thought I had to do everything in my power to make it possible for him to not be in special education, to go to college, to live on his own—-if I could make sure of this (I used to think), I could go to my grave in peace. And when Charlie was 5, he needed 1:1 teaching, he couldn’t read, he couldn’t really talk, and we’d done almost every educational and other (as in biomedical) treatment we could read about. Our focus shifted to the day by days of teaching and being, and listening to Charlie. I think at that point I realized that the “autism wars” were inside of me; that however much I don’t see eye to eye with others about causes or treatments and so forth, the population of people who talk and think about autism every and all the time is hardly everyone, and that we’re more in this together than it might seem, or than we might wish it to seem. I had an image of what Charlie “should” be, and I wasn’t keeping my eyes focused on the real boy really in front of me. The boy who likes bikes over books, and hanging under the pool water than curled up on the couch with one of those books. I’m not sure at all where rhetorical calls to “make war on autism” are getting us, but good teaching and treatment for autistic children are simply necessary. Amen, sister. (Source: Everyone's Blog Posts - Asperger's Syndrome)

Moms on autism episode 6 | sleeping issues

Autism Podcast — Thu, 03 Jul 2008 07:05:51 +0100

Podcast 6: Sleeping Issues Difficulty sleeping? You’re not alone! Autistic children have VARIED sleep patterns.Listen Now (Source: Autism Podcast)

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Why vaccines are important.

ASD :: Commentary on Autism, Disability, and the World. — Thu, 03 Jul 2008 05:52:00 +0100

Okay, so Ramesh Ferris looks nothing like Mal Reynolds. For one thing, Ramesh has more muscle in his upper body. For another, Ramesh is of Indian descent (as in, he was born in India). But he's still a "Big Damn Hero" in my mind.Ramesh is a polio survivor. He was adopted from an orphanage in India by the current Anglican bishop of the Diocese of Algoma, Ron Ferris, and has lived nearly all of his life in Canada. Because of this, he has had access to all kinds of health care and rehabilitation that he would not have had in India.Ramesh can walk because of crutches and braces, but he only has these things because he was lucky enough to be adopted into a Canadian family. Six years ago, he visited India and saw first-hand what his life would have been like without that intervention.Now, Ramesh is using a hand-cycle to cross Canada - from Victoria, British Columbia right through to Cape Spear, Newfoundland. I met him on Canada Day (July 1), as I was attending the celebrations in Thunder Bay, Ontario, with my parents. (I am currently on vacation, house-sitting and cat-sitting for my parents as they visit my youngest brother and his wife in Toronto.)I've provided some links below so you can explore things on your own, but I wanted to give a nice preamble and leave you with some facts about polio to keep your brain active for the next little while. All of these points can be found on the official web site for Cycle to Walk.Polio (poliomyelitis, or poliovirus) – source: http://www.rotary.org/Enters through mouth; multiplies in tonsils and lymph nodes. Proceeds togastrointestinal tract. Virus multiplies in intestines and spreads via feces (diaper changes, contaminated water, poor hygiene, etc.). Can cause paralysis within hours and attacks motor neurons in the brain stem, affecting breathing. More than 10 million children will be paralyzed in the next 40 years if the world fails to capitalize on its US$4 billion global investment in eradication. Historically, polio has been the world’s greatest cause of disability. A single dose of vaccine can cost as little as US60¢.Polio in the Developed WorldPolio is literally an airplane ride away. Like people in other developed countries where national immunization programs have protected generations from the devastations of polio since the introduction of the Salk (1954) and Sabin (1961) vaccines, Canadians have come to feel so safe from the disease, that many now consider it unnecessary to immunize their children. In today’s age of frequent, international travel, all non-immunized people are at risk no matter where they live. Polio is literally an airplane ride away. In July 2007, a positive case of polio was confirmed in Australia, as was the case in 2006 in Singapore. The GPEI News also reported the isolation of wild poliovirus (wpv) in the sewer water of the city of Geneva in August 2007. It is “due to high vaccination coverage and good sanitation” that detection of the virus was not considered to “represent a significant risk of outbreak.”Polio in CanadaIf asked, most Canadians would say that polio is “solved.” So, educating Canadians about polio, the vaccines and advocating continued immunization is absolutely necessary. Polio is not solved. In Canada, the immunization rate against polio is at 89%; leaving nearly four million Canadians (11%) vulnerable to this viral infection. According to WHO calculations, the rate of immunization is presently low enough to put Canada at risk for at least localized outbreaks. “As long as a single child remains infected with the poliovirus, children in all countries are at risk of contracting the disease. The poliovirus can easily be imported into a polio-free country and can spread rapidly amongst immunized populations. Between 2003 and 2005, 25 previously polio-free countries were reinfected due to importations.” - (WHO) Canadians should be aware that in addition to the threat of new polio infections, more than 10 million polio survivors worldwide are living without access to the rehabilitative support that would enable them to overcome the devastating physical effects of polio.Polio in the Developing World Despite the great success of the Global Polio Eradication Initiative (GPEI), spearheaded by Rotary International (R.I.), the World Health Organization (WHO), the U.S. Centre for Disease Control and Prevention (CDC) and UNICEF, in reducing the number of new cases by 99% since 1988, the hard fact is today, polio is still very present in four countries; India, Pakistan, Afghanistan and Nigeria. Polio remains endemic in four countries:Nigeria: 264 new infectionsIndia: 590 new infectionsPakistan: 30 new infectionsAfghanistan: 13 new infectionsPolio has re-infected the Democratic Republic of the Congo, with 41 new cases in 2007. A total of 95 instances of polio infection occurred in non-endemic countries in 2007.A Culture of CrawlersThey are doomed to living on the ground, to getting about from place to place by crawling, using sandals over their hands to protect them and pieces of rubber tires strapped over their knees... These polio survivors without rehabilitative support are called ‘Crawlers’. They are so many as to constitute a ‘Culture of Crawlers.’ They need our help.Year-to-date infections in 2007 Source: http://www.polioeradication.org/ FacebookOfficial Web SiteThis post's icon was created by the author. (Source: ASD :: Commentary on Autism, Disability, and the World.)

Why i don’t hold charlie’s hand all the time now (but still sometimes)

Autism Vox — Thu, 03 Jul 2008 05:04:01 +0100

Don’t know about you, but summer has so far been anything but slower-paced and lazy around here. A friend who’s also an academic likes to say that he got into “the business” for the three-months summers: guess I take after Charlie, though, and do better with the same old same old routine of things. I’ve taken on some, or rather, some more administrative duties at work and start teaching summer school next week (a course on Psychology and Literature for high school students—-I suspect I’ll have some things to say regarding it here). It’s also Freshman Orientation time, and this morning was filled with calls to students about classes, putting together readings for the course, planning for a big activity next March the very thought of which is kind of exhausting me, emailing back and forth with Charlie’s teachers about a loud noise desensitization program, grabbing Virgil’s Eclogues to translate with two students for two hours. Jim and Charlie picked me up at 3pm and Jim went to work on his book and Charlie and I went bowling and then swimming—-well, Charlie swam and I sat down to watch. Until he was 9, Charlie being in the pool meant I had to be in the pool. He’s a better swimmer than me but I felt I had to shadow Charlie. There might be excessive splashing or bumping into people or the wall while Charlie swam on his back, and I dreaded when it was nearing a quarter to the hour, as this meant Adult Swim and I had to drag Charlie out. And I doubted that Charlie would hear me calling to him from the pool’s edge. He does now, and has been for the past year and a half and while I don’t think I’ll ever be a magazine/summer novel reading mom (though I did find myself in possession of this book, which I read through while Charlie took his usual excessively long shower in the YMCA’s family locker room), I usually watch Charlie swimming from the sidelines. I still get plenty splashed and walk him up the stairs to the water slide (especially if there’s a line), but now there is a bit of a (brief) sit-down and almost relaxing aspect to going to the pool. Kind of amazing, I would have thought before, and a sign of how Charlie changes and—far from being a toddler in an adolescent body—how he, slowly yet surely, matures. While I found much that recalls our live raising Charlie in the stories of four Wisconsin families in an article in the July 2nd Capital-Times (Madison, WI), I am uncertain about the title, which is “Arrested Development: Day-to-day struggles of autistic children affect entire family—-which seems to imply that life with autism, both for an autistic person and for her or his family, brings everything to a halt. On the one hand, it’s true. I do feel as if my life came to a halt of sorts when we found out that Charlie had autism, and there’s been many many times when we’ve stopped projects, career plans, even classes with students opening their textbooks, to take care of Charlie. I don’t regret any of these moments. On the other hand, Charlie’s development, while not “normal” and sometimes seeming to move eight paces back for every seven forward, continues. I’ve noted his evolving emotional awareness; it’s not only in the pool that he can walk by himself, but also on the sidewalk and even in a store parking lot (though I’m still fast to grab his hand and nervously watch every car). To the random outsider, Charlie does plenty of things that are baffling and don’t seem at all age-appropriate, but I’ve my own internal mom-scorecard, and I know where he started from, and how very far he’s grown, how he’s traveled. How much Charlie’s changed, could not have been predicted when the word and the reality of “autism” entered our lives in early 1999. At the time the word seemed like a burr that’d gotten stuck in our throats; how it’s evolved into something tall and strong and lovely and unique. So puzzling—-and at a time when bills for insurance coverage are being passed in different states and when a Michigan is suing another insurance company for autism treatments—–to read about the mother in Massachusetts who failed to seek cancer treatment for her now 8-year-old autistic son. The mother, Kristen LaBrie, was arraigned Monday in Salem District Court and pleaded not guilty to one count of child endangerment; she was released on personal recognizance: In a police report filed in court, Salem police detectives said the child [Jeremy Fraser] had an 85 to 90 percent survival rate when first diagnosed. He was to get five stages of chemotherapy at Massachusetts General Hospital in Boston and at home, which was to be administered by LaBrie, police said. Police said in the report that LaBrie changed her son’s appointments a dozen times, failed to administer medication, failed to pick up medications at the drug store and, as a result, “his cancer has returned quicker and stronger.” [Eric] Fraser [Jeremy’s father] said he could not co-parent with his former wife and that tensions grew so high he withdrew from directly caring for his son, fearing that continued contact with LaBrie would end with him facing criminal charges. He said he continued to pay child support but did not see his son from early 2007 until December 2007. In mid-February, the child’s doctors at MGH intervened after seeing the boy’s medical condition had declined, Fraser and police said. He said he does not know why LaBrie allegedly failed to get life-saving care for her own child. I don’t think he’s alone is not knowing why……and what might have happened if…… There is hope and there’s so much we can do, more than we think. Sometimes now—when, for instance, we’re walking on one of those parking lots—Charlie says “Mom, hand!” and reaches to hold my hand. We walk a few paces and he lets go and walks before me, and I know all I have to do is follow. Tags: asd, asperger, autism, autism blog, cancer, disabilities blog, disability, Family, family blog, growing up, lymphona, Parenting, pdd-nosShare This (Source: Autism Vox)

Autistic children grow up

Facing Autism in New Brunswick — Thu, 03 Jul 2008 04:00:00 +0100

Autistic children grow up.They get taller, bigger, stronger. And like other parents we must adapt as they do, both to continue to enjoy their presence in our lives and to help them develop to their fullest potential. For some parents of autistic children the physical growth of their children also represents a point of departure; they must part company with their autistic children whose behavioral challeges can no longer be accommodated coming from the large, powerful frame of an adult. The brutal reality is that some parents (particularly mothers) and siblings are physically attacked by the autistic children, brother or sister for whom they care so deeply.I have read on the internet heart wrenching stories of parents who have had to make the agonizing decision to send their autistic child/adult to live in residential or institutional care. As a lawyer I have provided some pro bono legal services to parents struggling with the challenges of caring for autistic children who have been aggressive to them and had become a risk to family members. Such realities are not the usual autism fare of CNN, New York Magazine or Good Morning America. They are real none the less for the parents who care for these children and mourn, (yes Jim Sinclair MOURN), the premature loss of their children.Above are pictures of our son Conor, 12, with his mother, Heather (also author of Goody Bledsoe, see right side of page). Conor, diagnosed with Autistic Disorder, is now slightly taller than his mother. He grew like a weed this past year, with the usual changes that accompany that stage of life. When Conor is outside the house by himself, in the yard or on one of the steps, we check constantly. Sometimes visually, sometimes by asking him to say "Hi". On one such occasion I was startled by the deep man's voice that answered. It was Conor's voice, no longer the voice of a boy.Conor is aggressive on occasion. We have "managed" the aggressive aspects of his behavior, thanks in large part to Applied Behavior Analysis therapy which has also helped Conor with so many areas of life. But there are still times when it is difficult. And we know that a day will likely be coming when we will no longer be able to have him with us in our home. As Conor grows bigger and stronger and we grow older and weaker.In the meantime though we enjoy Conor and all that he has brought to our lives. We do not subscribe to the misguided "autism is beautiful" ideology that uges people to find joy in their child's neurological disorder. We accept the realities of Conor's autism, we face those realities and we try to do something about them, to help Conor overcome them to the fullest extent possible. We do so with great joy, the joy of Conor, a fun loving, affectionate but challenging blessing in our lives. For as long as we can.autism (Source: Facing Autism in New Brunswick)

Lost for 4 hours

Autism Vox — Wed, 02 Jul 2008 22:00:29 +0100

The driver of a minivan taking a 9-year-old autistic boy, Justin Colon, to summer camp got lost for four hours and failed to bring the child to his program. When Justin’s mother, Dawn Gorman, contacted the bus driver by cell phone, the driver was unable to say where he was and stopped answering the phone after awhile. Gorman then called the police, as reported in today’s Asbury Park Press: Capt. Bruce Hall of the Marlboro Police Department, said one of his officers spotted the vehicle a mile or so from the camp facility and brought the child to the police department. The driver, who had an unauthorized person — a friend — with him in the minivan, said he was lost for that period of time, Hall said. Gorman refused to send her child with the same transportation company — Severe Transportation — although the company sent a new driver on Tuesday. She said the Harbor Haven school in Marlboro, which conducts the summer camp, contacted her and offered to pick up and drop off her son so she could get reliable transportation. The school told her not to worry about the cost and that they would wait to see if the Edison school district would pay for it, she said. Bill Muzzio, transportation director for the Edison school district, said the board terminated the contract with Severe Transportation for the run to the Marlboro campsite and initiated a new contract with Harbor Haven on Tuesday. The board is still using Severe Transportation for other runs. As of Tuesday evening, Gorman was still not sure if she would send her child in the school transportation service or keep him home. “It’s a very difficult situation after what I’ve been through,” she said. I’m pretty sure my son would have been upset to find himself on a bus (and not his usual schoolbus) after one hour, but four hours? And Charlie would have been quite aware that the driver was lost. Am grateful he has summer school in district, with a bus from the county’s education commission. Tags: asd, asperger, autism, autism blog, bus, disabilities blog, disability, driver, Family, family blog, lost, Parenting, pdd-nos, SchoolbusShare This (Source: Autism Vox)

Stem cell mutation and rett syndrome

Autism Vox — Wed, 02 Jul 2008 19:15:12 +0100

Rett Syndrome has been linked to mutations in the MeCP2 gene; Rett Syndrome causes impairments in language and cognitive and fine motor skills and seizures; it is, according to the International Rett Syndrome Foundation, often misdiagnosed as autism. A recent study published in the June 30 in the Proceedings of the National Academy of Sciences shows that an early stem cell mutation may be linked to Rett Syndrome. Stem cells can develop into many different types of cells in the body and can “theoretically divide without limit to replenish other cells as long as the person or animal is still alive.” From Science Daily; the research was led by Stuart A. Lipton, M.D., Ph.D., a clinical neurologist and Professor and Director of the Del E. Webb Neuroscience, Aging and Stem Cell Research Center at the Burnham Institute of Medical Research: Discovered in Dr. Lipton’s laboratory, MEF2C turns on specific genes which drive stem cells to become nerve cells. When MEF2C was deleted from neural stem cells in mice, there was a faulty distribution of neurons accompanied by severe developmental problems. Adult mice lacking MEF2C in their brains displayed abnormal anxiety-like behaviors, decreased cognitive function and marked paw clasping, a behavior which may be analogous to hand wringing, a notable feature in humans with Rett syndrome. “There’s a yin and yang to this MEF2C protein,” said Dr. Lipton. “My laboratory recently showed that MEF2C induces embryonic stem cells to become neurons. In this new research, we show that knocking out MEFC2 in the brain results in mice with smaller brains, fewer neurons and reduced neuronal activity. The commonality is the protein’s association in making new neurons.” This study is the first on neural stem cells and the development of autism or, more specifically, Rett Syndrome. Dr. Lipton notes that “‘Having identified a mutation that causes this defect, we can track what happens. Perhaps we can correct it in a mouse, and if so, eventually correct it in humans’” Other studies have looked at specific genetic mutations and there has been speculation in media reports about a cure for Rett Syndrome as a result of these genetic findings. Tags: asd, asperger, autism, autism blog, disabilities blog, disability, Family, family blog, Parenting, pdd-nos, rett syndromeShare This (Source: Autism Vox)

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American nerd by ben nugent

Asperger's Conversations — Wed, 02 Jul 2008 18:53:47 +0100

I'm really enjoying Ben Nugent's new book, American Nerd, which disects modern notions of "Nerdism" and "Geekdom" in our culture. I happend to pick up an interview he did the other day on WBUR's "On Point" from NPR (if you're driving just a few miles to the east of Keene, NH you can pick up the Boston stations, but not here in Keene). The book should be of interest to anyone on the spectrum or anyone who knows anyone on the spectrum. Ben has offered to do an interview for Asperger's Conversations...I'm hoping he can wait until I finish what so far is a terrific book! (Source: Asperger's Conversations)

So.. lincoln or darwin?

Interverbal: Reviews of Autism Statements and Research — Wed, 02 Jul 2008 17:56:00 +0100

I just finished reading an outstanding comparative piece, lookingat Lincoln and Darwin. It asks who was the more influential man.Despite being an inherently absurd question and leading to the inevitablepeeing contest in the comments, the article is simply just excellent. It is alsomostly accurate.Coming from a scientific and skeptical viewpoint, it is excellent to see Darwin'slife presented correctly in a major media source. Also, the comments are great dealof fun. Put on a hard hat and grab some popcorn and have at it! (Source: Interverbal: Reviews of Autism Statements and Research)

Not a nice thing to say

Autism Vox — Wed, 02 Jul 2008 16:46:38 +0100

Can you imagine having this said to you? “One family I met took their child to the doctor and the doctor said: ‘If he was a dog you would put him down.’” As quoted in the February 7 Campbelltown-McArthur Advertiser (Australia). Tags: Animals, asd, asperger, australia, autism, autism blog, disabilities blog, disability, doctors, dogs, Family, family blog, Parenting, pdd-nos, Stereotypes, sydneyShare This (Source: Autism Vox)

Camping in monmouthshire

Aspie Home-Education — Wed, 02 Jul 2008 16:41:00 +0100

by an organic vegetable garden... (Source: Aspie Home-Education)

Getting experience

NTs Are Weird — Wed, 02 Jul 2008 13:11:19 +0100

In a previous blog post, I referenced employment being denied to people without prior job experience, as an example when a negative outcome may not be the result of prejudice towards disability, but something else (in this case, something that would have happened whether or not the person was disabled). Some comments asked, “How do people get jobs if everything requires experience?” The short answer is: It is hard, but not everything requires experience either. I’ll explain how I got to my current position, in the computer field, but I don’t want readers to lose track of two keys: persistence and luck. I have applied for dozens of jobs I didn’t get, especially early in my career when I was willing to do almost anything computer-related. Heck, it probably took me 30 tries to get a dishwashing job before I did computer work, and those jobs are supposedly easy to get. Unfortunately, when it comes to seeking employment, the odds are that you won’t get a given job, no matter how qualified you are or the amount of effort you are willing to expend, so you can’t give up after a rejection, or even after a few dozen rejections. Know that this happens to neurotypicals, too, not just autistic people (a recent job I hired had over 80 applicants - that means over 80 got rejected since I had only one opening). The other key is luck: there is a lot about a job which isn’t discussed in a job posting. I’ll talk more about this one later. My first computer job was strictly volunteer. I spent the day reformatting Word documents (something I was good at - probably due to the autistic attention to detail). Over time, I did more and more computer work, and was entrusted with more important tasks. All of the computer tasks were easy for me, and my level of expertise was far greater than needed for that job. But it helped me get “in the door”. Eventually, the non-profit applied and received a grant to employ a disabled or disadvantaged teenager full-time during the summer. I was hired into that position (I remember thinking, “How can they call me disabled?!”). Over that summer, I learned what work was like, and I learned not computer skills but rather work skills. I actually had to be taught how to answer the phone politely, what questions not to ask coworkers (because they are too personal), how to keep track of what I need to do, etc. The great thing (this is part of the luck I’ve had) is that this organization was willing to do that. Perhaps it was because I was making minimum wage, and thus the expectations weren’t as high as if I was making the normal rate for a computer system administrator, but I think the people there were simply enjoying seeing me learn to fit into an office. These skills are important - probably not important in landing a job, but vital in keeping it. Few employers would have been this patient with me. After that job, I did some dishwashing jobs (lots and lots of rejection before I got one). Then, I went to college. During this time, I did some consulting work at $20/hour for one of the organizations I volunteered for previously. It turns out that they ran into a bind once I left and decided that paying me $20/hour was way better than paying someone with years of experience $200/hour! So, I earned a great wage for a few hours a week of work, while also gaining more experience. Over time, friends learned of my consulting gig, and talked to others about it. I also sold computers during this time, to friends and coworkers of my parents. I charged $100 or $200 per hour (depending on how much work it was going to be) to scour different computer deals and help people determine which computer was best for them. It’s amazing how many people will pay $100 for you to tell them what to buy, and it was something I enjoyed. During the summer of my first year of college, I sought and worked an internship. The internship was at the company my father worked at, and was normally menial labor. One of the perks the company provided to employees was to hire their kids during the summer as temporary help, usually menial labor. One of the people I helped to buy a computer happened to work there, as well. This person, when he found out I applied for the normally menial labor internship, told the director of IT (Information Technology) that I would be a really good fit in that group. So, I was hired as an intern in the IT department, and spent my days doing the tasks others didn’t particularly want to do, such as inventorying software on PCs (to make sure we were legally licensed on all software). Back at school, I tried, very unsuccessfully, to find work. After months of trying, and being rejected over and over again, a “friends of a friend” called me up one day and asked, “Do you know how to move a small phone switch to a new building?” Apparently, the cost to move this small 10 phone system was going to run several thousand dollars, if a telephone contracting company was used. I previously learned a little about phones at the internship, and explained that I thought I could do it, and would do it for a pretty low rate. So, they hired me to do it and I spent a few days crawling around an incredibly horrible attic running cables. At the end of the weekend, when the phones all worked properly, the owner of this small web design company came up to me and asked, “Do you know how to program?” I told him that I did, and was offered a job as a programmer on the spot, which I accepted (for minimum wage). It wasn’t great pay, but, finally, I was doing something that required a good understanding of computers. This job grew, and I eventually became the lead programmer at a spin-off of this company. I was approached one day and asked, “Would you take a huge raise, but move to another community, to be part of the spin-off?” I took the chance, and made the move - it was easy at the time, as I had very few roots in my current community. While working there, I eventually sought other jobs. I still only had a couple years of experience, so it was hard to find great jobs where I could get in the door. But, I found one eventually, an unusual job in e-commerce fraud detection work. A small startup needed someone to write software to detect fraudulent use of their system, something I had never done previously, but which I felt I could do well. It sounded, for some reason, like a really great job for me, so I thought I’d go a bit further than I usually went when applying for other jobs (and getting rejected!). I think the key to getting that job was to “get noticed”, so after hearing nothing for two weeks, I sent a letter and my resume to them via next-day courier - I knew that this type of package would at least get opened and looked at, because it’s an unusual way of applying for a job. Sure enough, I got a call within two days requesting an interview. This is where the luck comes in: I was told later that I was the first employee hired that wasn’t a former friend or coworker of someone already at the company. The reason they were willing to take a chance on me, apparently, was that I “thought very differently than everyone else we’ve seen.” Over time, I found that they were basically - unknowingly - seeking an autistic person, and every autistic trait I had was seen by them as an asset. After working there, I had enough experience on my resume for the types of jobs I was seeking, so I’ll leave it there. As I mentioned, persistence was very important for me. Getting the first job was by far the hardest. In addition, luck was important - but that isn’t as bad as it sounds. When I don’t get a job (and I don’t, even with experience, get interviews everywhere I send an application), I can now think, “that’s just bad luck,” rather than, “I must be completely unemployable.” I also found how one person I helped when they needed to buy a computer might get my “foot in the door” at a company years later when I am looking for work - and I’ve seen that several times in other ways, my reputation as a good employee has helped me get jobs that I would never have got otherwise. Finally, another key was taking opportunities that were one step closer to my goal whenever I could - being open to something that gets me to my goal, rather than having to get my goal at step 1. I know that I didn’t give a formula people can follow step-by-step. That’s intentional. Employment is hard for us, and luck has a huge part to play. I’ve seen plenty of very qualified people who can’t find work, simply because of bad luck - they do everything right, but aren’t hired. But it is possible to get work, even without experience, and I thought I’d post this because I felt the questions about “How do I get experience” were legitimate queries, not simply frustration at the work world (although it’s okay to be frustrated about this, too - it is hard, and the system is difficult, even broken). The only way I could answer the question was to describe what worked for me - what works for someone else is likely to look very different. Anyone who has a step-by-step approach to getting a job doesn’t know what they are talking about. (Source: NTs Are Weird)

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