Ari Ne’eman on disability

23 Dec

There is a myth that is spreading around the internet. The myth that neurodiversity means denying that autism is a disability. I see this over and over on this blog in the comments. I see it elsewhere in blogs that put truth second to promoting their messages. I have assumed that most people see the myth for what it is and disregard the comments of the uninformed or the misinformationists.

So you can imagine that was quite dismayed to see the myth be repeated by Lisa Jo Rudy on the autism.about.com blog.

Ari Ne’eman is the founder of the Autism Self-Advocacy Network (ASAN) and a well-known activist on behalf of the rights of individuals on the autism spectrum. He’s also a controversial figure because of his views on “neurodiversity” – the perspective that autism is just one of many different ways of thinking, rather than a disability or disease to be cured.

I don’t think she was trying to discredit Mr. Ne’eman, she was just passing along what she had read. Ms. Rudy was kind enough to post a message that Mr. Ne’eman sent, correcting the misconception:

Correction: Ari Ne’eman writes to say: I have never claimed autism is not a disability – in fact, I worked to pass the ADA Amendments Act, to ensure that it would be considered as such under the ADA. The claim that I or ASAN’s advocates don’t consider autism a disability is an unfortunate myth, which I’d appreciate if you could correct

I think a few more comments by Mr. Ne’eman are worth noting. This one from the Cat in a Dog’s World blog.

“As for the comment made about my Jewish Week article, I don’t recall saying at any point there that autism wasn’t a disability – only that it was not a disease, something I think exemplifies the neurodiversity position much better. I did seem to imply it though with the phrase “difference is not disability”. Though the phrase is technically true, I shouldn’t have phrased it that way. I was wrong to do so – and if that is the worst mistake I’ve made or ever will make in print, I’ll count myself lucky. Fortunately, I have years of advocacy work and public statements that show my work in the Disability Rights movement as a person with a disability.

So let me be clear now – Asperger’s and the broader autism spectrum are disabilities. I know this not just from personal experience but because I helped pass the law that reinforced this as the case – the ADA Amendments Act, which re-established a broad definition of disability under the ADA after a decade of judicial narrowing that drove even significant intellectual disability out of the law’s coverage, much more so the vast majority of the autism spectrum.

It was one of the first things I had the pleasure of doing when I got involved in Washington. Here’s the press release from when we announced the compromise brokered with the business community:http://www.civilrights.org/press/2008/employers-and-disability.html It comes from the Leadership Conference on Civil Rights, a group that I consider it an honor to have had the opportunity to work with both during the ADA Amendments effort and the more recent advocacy push around health care reform. We have a long way to go in building our community, but I’m really heartened that we’re being welcomed by the cross-disability and civil rights communities. It’s a good sign about our movement’s future.”

Many people spreading this myth rely on a comment Mr. Ne’eman made when he was seventeen years old.

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.

Difference is not, in itself, disability….

That is not the same thing as saying that autism is not a disability, not at all.

The odd thing, when people quote that paragraph, they tend to leave the final line off: “Someday, I hope the world will recognize that those who think in different ways should be welcomed.”

Mr. Ne’eman contributed testimony in support of the ADA (Americans with Disabilities Act) Amendments Act, or ADAAA, being one of many thanked in the Congressional Record:

“Finally, at the risk of leaving out some individuals, we want to recognize some of the additional countless individuals who helped with educating Members of Congress, doing important coalition and media work, and providing legal input on the bill as it progressed through Congress, from its first stages through the final vote today

One need only spend a short time on the Autistic Self Advocacy Network’s website to find many statements by Mr. Ne’eman and others clearly showing that ASAN members recognize autism–as in all the autism spectrum disorders–as a disability.

Mr. Ne’eman and ASAN also worked on recent legislation to limit seclusions and restraints in schools.

I am curious as to how people reconcile the myth that Mr. Ne’eman doesn’t consider autism as a disability with his efforts in the disability community?

From what I am reading on the net lately, people are now considering the recognition of autism as a disability as something new for Mr. Ne’eman. The Congressional Record I cited above is from 2008. Of course, one could notice that in his 2006 [correction note, I mistakenly put 1996 here originally] essay, the same one that is used to paint him as denying the disability inherent in autism, Mr. Ne’eman refers to his own experiences within special education.

Unfortunately I don’t think things will change much for Mr. Ne’eman. His detractors are not prone to admitting mistakes. I don’t expect them to make much inroads in derailing Mr. Ne’eman’s nomination to the National Council on Disabilities, either. It is one thing to spread misinformation on the internet. It is another thing entirely to convince people who have seen Mr. Ne’eman working within the disability advocacy community.

49 Responses to “Ari Ne’eman on disability”

  1. EquiisSavant December 23, 2009 at 10:36 #

    This post, as well as the entire controversy (which I have also seen before on the blogs) is all over the place. I don’t think Ari ever said in any of his comments anything contradictory, and I don’t think he should let more aggressive types who might better be cross-examining a witness in a court trial push him around or into a defensive position. Ari is absolutely right.

    I have worked with the Americans With Disabilities Act since it was passed right after I graduated law school in California — that’s almost 20 years. I use the ADA myself to assert my savant Autism rights. People need to start listening to the main theme running through adults on the Autism spectrum who write and produce videos. from Ari to Alex Plank’s video to Amanda Baggs and Carly, the common theme is that (#1.) our Autism spectrum condition a/k/a “disorder” is a neurological difference in brain neurotype that is not in itself necessarily inherently disabling IF society structured an Autism spectrum World; however, (#2.) society did not; instead it structured a non-autistic social neurotype World that at every level imposes insurmountable barriers to people with Autism spectrum conditions; as an actual and proximate result, (#3.) Autism is a “disability” because non-autistic neurotypicals handicapped our Autism spectrum condition by building a societal structure riddled through and through with Autism spectrum barriers.

    First of all, we have the fundamental Constitutional right to be accepted for who and the neurotype we are being on the Autism spectrum, and not forcibly “normalized.”

    Second, we have the right to whatever means we must have to effectively communicate for ourselves independently — even if it is only possible with Internet computers and assistive technologies, and not continue to be relegated to being called all sorts of stupid unscientific names by others who want to speak for us to censor our First Amendment content viewpoint of our thoughts and ideas, what we want and need, and the independent decisions in the exercise of our independent judgment is what we personally choose to make. We have a fundamental Constitutional right to freedom of choice ! Not a guardian’s choice or having a lawyer who doesn’t understand Autism spectrum conditions forced on us as a proxy to speak for us or an IRB board deciding without our knowledge or informed consent to make us a cognitive experiment. We may have a different perspective that is autistic, but we have the right to have our perspectives and viewpoints accepted.

    Third, we have the same right to be free of disparate impact on Autism spectrum people as all others to have professional licenses; professional careers; the equal pay that comes with it; safe and Autism accommodating homes in our own separate private dwelling including home ownership; drivers licenses where we can hands-on driv; academic and professional licensing exams and processes that do not penalize Autism spectrum conditions; equal Autism health care access same as all others for other conditions; in-and-out of home supports and services (including therapy animals) where our employment and careers do not cover all of the cost; Autism disability benefits without weeks; months, or years of delay — we have a developmental condition; lawyers trained in Autism spectrum conditions who can represent us in the same types of things others go to court for and not make things up about us we don’t want; and judges who are trained in Autism spectrum conditions to understand that not every autistic person is a criminal or belongs in a mental institution.

    I realize Ari helped get some of the disability laws passed, but he is not (yet ?) a lawyer — the ADA is a very complex piece of legislation, and it is not out of the realm that properly teaching it in our law schools would easily take a two-three semester course. Most licensed lawyers cannot learn the ADA in less than two years from what both myself and my husband (a Florida bar member) have observed. If one REALLY studies the ADA, Title II clearly and sweepingly intends to eliminate ALL forms of exclusion, as well as discrimination in all aspects. As relates to the ADA’s broad command in 42 U.S.C. Sec. 12132, Sec. 12131(2) makes clear the ADA not only applies the legal definition of “disability” to the inherent parts of a condition, but to “removal of barriers” — i.e., society’s handicaps that memetamorphosize some conditions that are not inherently a disability but rather a difference like Autism spectrum condtions, into ones that are disabilities by the fiat of society’s insurmountable handicapping structural barriers.

    I have followed this topic for quite some while, and I see the back and forth confusion expressed in the above post. I think if what Ari has CONSISTENTLY said is viewed through the lense of America’s Emancipation Proclaimation for disabled people (as the Americans With Disabilities Act is otherwise known)– whether an inherently disabling condition or a difference condition that society metamorphosized by barrier handicaps into a “disability” — it will become easier to see that there are no inconsistencies in the Neurodiversity position.

    This is of significant importance, because none of us involved with the Autism spectrum being dumped on financially by our government programs and services or denied equal opportunity and/or due process are ever going to make our voice heard if we cannot unite the common themes we adults with Autism spectrum conditions continue to say, write, and blog about that have been spoken so well and consistently by Ari and the Neurodiversity movement.

  2. Lisa December 24, 2009 at 16:00 #

    At this point in history, I think we’re hamstrung by the fact that “autism” describes so many different people with so many levels of visible and invisible abilities and disabilities.

    And it’s all too easy for people whose kids are profoundly disabled to feel misrepresented by adults whose autism is clearly much less disabling.

    I do understand why some folks would feel that Ari is “too abled” to appropriately represent their kids… the problem is that their kids are truly unable to represent themselves. So the question, IMO, becomes “are you, the parents, better able to represent your non-verbal children than Ari Ne’eman, an adult on the autism spectrum?”

    Perhaps the best option would be to include both an Ari Ne’eman AND the parent of a profoundly disabled person on the commission? The difficulty there, I’m afraid, is that then you have yet another split between the “biomed” and the “not-so-biomed” communities!

    Lisa

    Join me at my Autism at About.com Facebook Page!

    • Sullivan December 24, 2009 at 18:08 #

      And it’s all too easy for people whose kids are profoundly disabled to feel misrepresented by adults whose autism is clearly much less disabling.

      In my mind, there is a group of people who have successfully created a wonderful catch-22. Anyone capable of participating in the debate is too “abled” to represent children, like my own, who are too disabled to represent themselves.

      I’m saddened that you buy into it. As “neurotypical” parents, are we, then, too “abled” to truly represent our children? No one says that there should be any single voice that represents autism. No, we represent a different perspective. Do we understand the ways autistic minds can differ from our own? No. We can have an understanding, but that is different.

      My belief is that autism with intellectual disability is different than intellectual disability alone. The needs, educational for the young and support for the adults, are distinct from the ID alone. While people such as Ari Ne’eman don’t have the experience of intellectual disability, they do have very critical experiences which can educate the community about the needs which are distinct from ID.

      Also, if we, as neurotypical parents, feel that we can understand our autistic, intellectually disabled children, why can’t we accept that disabled autistic adults have some understanding of what intellectual disability is?

      Some vocal parents try to create a world where they alone can represent their children. They then project this type of belief–that only one voice should inform the community–onto adult autistics.

      I have never seen ASAN or Ari Ne’eman say that they alone should speak for all autistics. I’ve found Ari to be quite welcoming of parental input.

      Perhaps the best option would be to include both an Ari Ne’eman AND the parent of a profoundly disabled person on the commission?

      The Council has multiple posts, and multiple people were nominated. I’d throw out a pointed question to many readers–how many even knew the National Council on Disabilities existed before this?

      Did you notice that at least one existing member of the NCD and two nominated members are parents of disabled children?

      One thing I have noticed from Ari and ASAN that I do not see in the majority of the vocal segments on the autism communities is a recognition of autism as a part of a greater disability community. There is a great hypocrisy in those who are creating the divide within the autism community, who project that divide onto groups like ASAN.

      The difficulty there, I’m afraid, is that then you have yet another split between the “biomed” and the “not-so-biomed” communities!

      To be blunt, this is a split between those who check primary sources and and those who create misinformation. You got caught in the middle by repeating the misinformation. It just so happens that the biomed community is a primary source of misinformation, but they are not the only ones promoting the “Ari Ne’eman doesn’t believe autism is a disability” myth.

      One could just as easily say that parents of severely disabled children have no experience to relate to the struggles of people like Mr. Ne’eman. I for one am very tired of the “this person is more disabled than that” debate. One of the main reasons I do not discuss the level of my child’s disability is that I don’t think it is relevant to the discussion. If we are to act as a community, we need to recognize the spectrum of experiences within the community. We need to represent all experiences. I find that it is usually the parents of the more challenged children who tend to try to put a split in the community, not the so-called high functioning adults.

      The notion that because someone appears minimally disabled on the internet, that person is “mildly” disabled is nonsense. I forget the exact specifics, but one recent study I read defined high functioning as a person who had a certain number of 5 word phrases (the number was actually quite low). By that definition, Kim Peek, a man who could speak, read, write, who had his own MySpace webpage, was “high functioning”. He was completely unable to care for himself.

      We autism parents have on incredibly valuable resource that parents of intellectually disabled children do not–high functioning individuals who can educate us about the condition. We shouldn’t squander this resource.

  3. Dedj December 24, 2009 at 17:04 #

    The most appropriate person to represent any child is usually (but certainly not always) the parent. However, this only extends towards the individual parent/child relationship. This is probably what confuses people like our friend Harold and his ilk.

    Once we come out of that relationship and start talking about representation as a group on the national stage, a parent may or may not be the best and most appropriate representative.

    Certainly, people who do not have autism may not be the most appropriate representatives for our interests as a group within society.

    I had a lot more to write, but the path needs clearing. Toodles.

    • Sullivan December 24, 2009 at 18:25 #

      The most appropriate person to represent any child is usually (but certainly not always) the parent. However, this only extends towards the individual parent/child relationship. This is probably what confuses people like our friend Harold and his ilk.

      There is also a myth that someone engaging in the community discussion is trying to take over a parent’s position to advocate for their own child. It is such an obvious straw man that I am amazed people have the guts to even voice it.

  4. Dedj December 24, 2009 at 18:07 #

    “I’m afraid, is that then you have yet another split between the “biomed” and the “not-so-biomed” communities!”

    How so?

    There are many mainstream autism therapies, including dietary, occupational, physical, arts, music, sensory, speech and language, and mainstream medical interventions.

    It’s entirely possible to be both the parent of a severally disabled autistic person and a supporter of mainstream therapies.

  5. Lisa December 24, 2009 at 18:19 #

    To be honest, I never thought much about disabilities at all until I had a son with autism. And one of the things I’ve learned as a result of having a son with autism is that I, as a neurotypical mom, am not always right about what’s best for him. I’ve often been surprised at what’s worked well, what’s worked poorly, who connects well and who doesn’t. I expect to be surprised by both my kids forever!

    I think, btw, that you all know what I mean by “biomedical” interventions. I’m not talking about fish oil and organic food. I’m referring to controversial DAN!-based interventions such as chelation, HBOT, etc. And I don’t think there’s any question that there is a split between those who believe in the efficacy of such treatments and those who… don’t.

    Obviously the splits within the autism world lead to well-intentioned but hard to manage differences in opinion regarding priorities.

    Since I don’t know much about the disability world as a whole, I don’t know how, for example, the cerebral palsy community manages the many levels of disability they see every day. Maybe Ari, on this Council, will be able to help us build on some successful disabilities models out there.

    Lisa

  6. Dedj December 24, 2009 at 19:15 #

    Chelation and HBOT aren’t themselves biomedical interventions, however, their co-option for uses which have – as yet – very scant theoretical and clinical evidence, is.

    “There is also a myth that someone engaging in the community discussion is trying to take over a parent’s position to advocate for their own child.”

    Indeed. Our friends in the anti-ND movement are far from the only people that have had to be corrected about this.

    One even went so far as to state that he, and only he, had any right to determine what was right for his child. He had to be informed – repeatedly, directly and in no uncertain terms – that determination of what is ‘right’ or ‘wrong’ for his child in terms of therapies and services is made on the basis of measuring positive and negative outcomes amongst clients like his son. By doing this, we can measure wheter services work or don’t. In other words, whether they are the right or wrong thing to do.

    Any involved professional can – and is likely obligated to as a condition of registration – make judgements about whether their actions of inactions is harmful to his son. Child services can also make similar judgements, as can teachers.

    He has the right to determine which available option he wants to take, based on informed consent. He has no right to justify his choice as the ‘right’ choice simply because he has a right to make it.

  7. Dedj December 24, 2009 at 20:31 #

    Also, the person mentioned above held forth that the views of the autism advocacy movement are irrelevant to determining the rights of parents to choose a particular intervention.

    He had to be informed – clearly and directly – that ethical considerations constitute an entire stream of clinical reasoning, thus whether an intervention is ethical or not IS something that helps determine whether it is appropriate to provide an intervention.

  8. Lisa December 24, 2009 at 20:57 #

    Dedj – I’m assuming that “biomedical” refers to any treatment that has a biological rather than behavioral or developmental impact. I could be misusing the term, though? So, for example, HBOT and chelation would “biomedical” because they have a biological impact, while ABA or RDI would be behavioral and develomental respectively. Let me know if I’m wrong about the term!

    BTW – intriguing point about parents feeling they should be the ones to choose the appropriate treatment for their kids with autism.

    At this point in the history of autism treatment, I feel we parents are kinda forced into that position (since, at least in my experience, no one else recommended squat except OT, PT and Speech therapy!).

    I would be thrilled to tiny pieces to have a qualified expert in my life who could assess my son and say “ah ha! here’s a kid who would do best with A and X therapies, as opposed to B and Z therapies. Here’s where to find them, here’s how to pay for them, and here’s how to assess the quality of the therapists you interview.”

    At this point, I feel that we parents wind up “experimenting” on our kids because we have no other way to know what works. I personally have tried relatively few treatments (floortime, speech, OT, PT, dance therapy, vitamins, social skills groups). But I know of some who have tried dozens of therapies – based on the fear that whatever they DIDN’T try would turn out to be The Thing their kid actually needed.

    Obviously, there are low risk and high risk treatments, and I personally would (and do) recommend avoiding anything that carries a significant risk. But the reality is that psychoactive medications are very risky… and often they’re the option of last resort AND the option that works.

    Lisa

  9. Dedj December 24, 2009 at 22:15 #

    “Dedj – I’m assuming that “biomedical” refers to any treatment that has a biological rather than behavioral or developmental impact. I could be misusing the term, though?”

    It’s hard to tell where the term comes from, as it doesn’t appear to be used in the mainstream literature in the same way it is in the autism literature. The nearest to it is Biomedical Science, which is the application of several fields of biology to the context of disease pathology and medical intervention.

    http://www.northwestindianaautism.com/biomed.php has a explanation of the term biomed when used in the autism literature.

    Bear in mind that there is a suggestion that biology effects developmental stages and behaviour. This is nothing new, but few people – myself included – will have a sufficient grasp of it to fully explain the mechanisms.

    Some people who may purport to be ‘biomed’ are simply alternative medicine or complementary medicine practitioners. Treatments with a direct biological effect are simply reffered to as medical, biological or physical treatments.

    I’m not sure why the ‘appropriate treatments’ bit should be intriguing. I would have thought it was elementary that parents have every right to choose what to do, but that it is not just up to parents to choose what is ‘right’ (ethically, legally, socially and clinically) for people with autism, as the particular person I alluded to earlier was suggesting.

  10. EquiisSavant December 24, 2009 at 23:14 #

    There are a couple new comments I want to reply to. Since I AM an adult with a diagnosis savant Autism, and have researched all types of disabilities and the Nation’s various disability discrimination laws for about 20 years, I am more qualified to speak on this subject than probably anyone in this Country. If any of you think not, then find me a person with an autistic savant subtype (genius like Kim Peek) diagnosis who holds at least three university degrees including an ABA-accredited law degree and an MBA degree, has passed one of the harder bar exams in the U.S., and has won a MAJOR LEAGUE U.S. National Sports Title honored in part by performing at Madison Square Garden. I have every one of those qualifications. If no one can come up with such a person, then I rest my case — I am the most qualified to speak on this subject in this Country. Not even Ari has the level of degrees and qualifications, and there is no indication he is an autistic savant artist, either.

    But Ari is something most of us adults on the Autistic spectrum can never do, and that is “fit in” to the neurotypical structured society America has built that is riddled at every level with Autism barriers and chains of oppression. It is very important in this National dialogue to remember three things:

    (1.) Ari, like myself, and numerous other very intelligent adults with Autism I see out there on the Internet, actually have the Autism spectrum conditions and we alone are the ones who can tell you what it’s like. Would you ask the seeing eye dog what it’s like to be blind ? No, it would be folly because the dog is sighted and has an entirely different perspective — one decidedly NOT that of the blind man, nor of the person with the Autism spectrum condition;

    (2.) The parents of children with Autism spectrum conditions are like the seeing eye dog as to the blind person. But these parents are also sometimes something else: selfish and don’t want the headaches of raising an autistic child and are lashing out at the World (including their autistic child sometimes) blaming everyone because ‘but for’ the “misfortune” (bad luck) of having an autistic child, their life could have been full of job promotions, parties, and comfort; or — the parents themselves are regarded by others as part of a suspicious class of persons who were formerly labeled “refrigerator mothers” and (as one litigation consulting group of PhDs recently put it), those who genetically passed on “aggression genes” who themselves are defective for harboring the “defective” Autism spectrum genes;

    (3.) There is an entirely third group of neurotypical non-autistic people with varying degrees of Autism knowledge and awareness, ranging from a negative (willful ignorance and even a type of KKK hate for Autism spectrum people) to ZERO (no knowledge or desire to have knowledge whatsoever) to skilled helpers (including friends, roommates, neighbors, K-12 educators, business persons, and some rare-in-number medical doctors, brain neurologists, pediatricians, psychologists, psychiatrists, and therapists). Included in this range, however, are almost 100% of our government workers at every state and federal level in every branch of the government, as well as vaccine makers and pharmaceutical companies.

    Overlaying this mileau, all three of the above-groups are subject to the “melting pot” of America effect, so that the above groups cover all races, ethnicities, gender, and cultures.

    No wonder there is such an inability to unite to help the people and families and caregivers/medical providers to Autism spectrum conditions throw off the chains of abuse, oppression, discrimination, prejudice, and inhumanity. But we must try.

    My first reply goes to dedj: I don’t know what state you come from, but in Florida, we citizens have a state right to receive any ‘non-traditional’ treatments we choose, so most of your treatise would be irrelevant to Florida. Moreover, an insurance company that refuses to cover the ‘non-traditional’ treatments Floridians choose can be sued for the refusal. So your entire construct either indicates there is inconsistency in others states to what Florida does that needs to be unified under Title II of the Americans With Disabilities Act, or you just don’t know what you’re talking about. Also, the entire construct of “patronization” of the independence of people on the Autism spectrum you paint in your last two paragraphs is HIGHLY OFFENSIVE to people who actually have an Autism spectrum condition. Who are YOU to speak for ME ? Can you stack your qualification to my above qualifications ? If not, why don’t you stop spreading inaccurate information and stope offending autistic people ?

    I know Lisa, so I’ll reply to her next: This statement is NOT true !!!

    “At this point in history, I think we’re hamstrung by the fact that “autism” describes so many different people with so many levels of visible and invisible abilities and disabilities.”

    It is not true because the Architectural Barriers Act of 1968, specifically classified Kanner Autism within the definition: “PHYSICALLY HANDICAPPED. An individual who has a physical impairment, including IMPAIRED SENSORY, manual or SPEAKING abilities, which results in a functional limitation in access to and use of a building or facility.” The Architectural Barriers Act was the very first federal law that required certain buildings to be accessible to people with disabilities, covers all buildings that are constructed or leased by the federal government, as well as any buildings built with a loan or a grant from the federal government. So, please, Lisa Jo, don’t obfuscate the clear legal definition out there that apply to Autism and try to pass the Autism rights movement off as an ‘unsolvable problem.’

    And THIS statement: “And it’s all too easy for people whose kids are profoundly disabled to feel misrepresented by adults whose autism is clearly much less disabling,” is very misleading as to the nature and structure of how our American government works.

    First of all, the Americans With Disabilities Act and other disability anti-discrimination laws give the right to speak independently to every person on the Autism spectrum and this means even if it requires pattern recognition-to-text computer assistive technology — it is an outright falsification to represent that even very profoundly disabled Autistic spectrum people are ipso facto unable to intelligently communicate their OWN (not their parents’) viewpoints, choices, and decisions. I have even read very intellectual discourse from adults with Autism who say they wear diapers ! So pls, stop spreading false information as the means to censor First Amendment speech of people who actually DO have an Autism spectrum conditions — also, given your comment, I think children with Autism should have a guardian ad-litem every bit as much as children in family law courts to maintain their own First Amendment speech, viewpoints, choices, and decision separate from their parents’ bitterness and agendas. I realize some parents really do support the bests interests of their autistic children, but many don’t — so you cannot proclaim a parent-bias type control-rule based on false information as justification to seize control of Autistic spectrum people over their own fate, lives, choices, and neurologies.

    And THIS whole statement is just complete BUNK !!

    “I do understand why some folks would feel that Ari is ‘too abled’ to appropriately represent their kids… the problem is that their kids are truly unable to represent themselves. So the question, IMO, becomes ‘are you, the parents, better able to represent your non-verbal children than Ari Ne’eman, an adult on the autism spectrum?’

    Perhaps the best option would be to include both an Ari Ne’eman AND the parent of a profoundly disabled person on the commission? The difficulty there, I’m afraid, is that then you have yet another split between the ‘biomed’ and the ‘not-so-biomed’ communities!”

    Pardon me, but I asked everyone to stack my exact qualifications above against anyone else out there — who actually has a non-verbal savant Autism diagnosis AND all the credentials in one person. I do not think you or any of the parents you offer can match those qualifications, and, as we would say in court, are because of that, not entitled to much weight. Adults with Autism are not involved in your whatever-“bio-med” vs “non-bio-med” disputes, not is that how we will allow you to define our “community.”

    From what I have researched about Ari, I think it is a huge misjudgment to say he is “able” as if he was seized by the neurotypical Body-Snatchers” and re-morphed into a perfect Ken Doll version of a 100 % “normalized” abelist neurotypical. Ari still has social issues that are a part of his Asperger’s if he has that diagnosis. It is a diagnostic Criterion, and to propagandize otherwise is to engage in materially misleading those who do not know about Autism spectrum conditions but want to learn. So I fail to see any meritorious controvery over how and why Ari is not qualified to speak for people with Autism spectrum conditions. Notably, most of the adult Autism internet comments following Ari’s appointment were positive and supportive and enthusiastic ! So, do you have any REAL facts to back up your dislike of adults with Autism speaking for our own neurotype ? And pls, address the fact that an Autism spectrum child could hire an Autism spectrum lawyer and the autistic lawyer could speak for the lesser capable child as can all people trained in the higher leanred professions for their peers and neurotype groups.

    Fr Sullivan, whose comments are much better though out — Thank you for your enlightening participation !!! I agree with many of the things you mention.

    I don’t think there can be “one voice” for Autism spectrum conditions any more than black people, women, or any other protected group. But I do believe that our state and federal Constitutions give Autism spectrum people and families the right to committees and boards and government representation on a state and federal level in all three branches of governments to a critical mass in how those memberships are composed. A committee or board without one single actual diagnosed Autism spectrum person on it is blatantly unConstitutional. American Indians did not accept anything less, and Autism spectrum people with genetics of a National Autism origin and our own neurotype language and culture should not have to accept it, either.

    The most significant point (thank, Sullivan !!!), is THIS one:

    “The notion that because someone appears minimally disabled on the internet, that person is ‘mildly’ disabled is nonsense. I forget the exact specifics, but one recent study I read defined high functioning as a person who had a certain number of 5 word phrases (the number was actually quite low). By that definition, Kim Peek, a man who could speak, read, write, who had his own MySpace webpage, was ‘high functioning’. He was completely unable to care for himself.”

    When parents like Lisa Jo mount an attack on Ari and the same on Amanda Baggs and even myself, they are NOT factually addressing the ABOVE FACTUALLY ACCURATE aspects of at least 10-30% of the people with Autism who are autistic savants like Kim Peek. I am one, by diagnosis. An autistic savant is BY DFINITION a person with SEVERE disabilities AND the paradox of higher intellectual abilities — frequently genius level far exceeding almost all of the neurotypical “normal” population.

    Like Kim Peek, I cannot entirely care for myself … BUT I graduated an American Bar Assn-accredited law school under the same rigorous standards all all other lawyers in this Country — including those Lisa Jo and dedj have to hire to represent them whenever they have a legal problem ! So why would Lisa Jo and some of the other parents and non-actual Autism organizations be so arrogant to speak for ME and for US ? I remain fully behind Ari’s Objective: “Nothing About Us Without Us” !

    So this raises the ultimate question: Where are we going with the selfish agendas and harmful division in this Autism debate and movement — backward ? Or forward ?

    If we are intelligent enough to create a plan to advance our Autism spectrum interests and advance our rights, then we must find a way to stop attacking each other and unite.

  11. EquiisSavant December 24, 2009 at 23:20 #

    I also want to mention, regarding dejd’s repeated reference to medical “ethics” as if they are God, those standards are, like all other state rules and policies, laws and statutes, subject to Title II of the Americans With Disabilities Act, meaning that if they conflict with any ADA right, remedy, or procedure, the medical ethics standard must be repealed, brought into compliance with the ADA for Autism, or must have a paper trail complying with 28 C.F.R. Sec. 35.105 to prove it was properly assessed and does, in fact, comply. So, dedj, please qualify your statements so they are not materially false by omission of the above information. Thanks.

  12. Lisa December 24, 2009 at 23:22 #

    Dedj – you say ” I would have thought it was elementary that parents have every right to choose what to do, but that it is not just up to parents to choose what is ‘right’ (ethically, legally, socially and clinically) for people with autism, as the particular person I alluded to earlier was suggesting.”

    I don’t grasp the distinctions here. You’re saying it’s up to parents to choose what to do, but not up to parents to decide what is right? On what basis, then, would parents decide what to do?

    Lisa

  13. David N. Andrews M. Ed., C. P. S. E. December 25, 2009 at 00:25 #

    “On what basis, then, would parents decide what to do?”

    Basically, the basis would be advice on interventions and likely outcomes, as known from the research, which is how it should be done… the parents get to be able to make choices based on what the professional team members know of how and why any strategy works.

  14. Dedj December 25, 2009 at 01:15 #

    EquiisSavant a few things:

    The ADA only applies in the USA (and possibly some territories). Neither I nor the initial person mentioned are American.
    We aren’t talking about medical ethics only. I have no idea where you got that from.
    I have not mentioned them as God. That is reading more than I have written.

    The intial contention was that only a parent can decide what is ‘ethical’ and ‘right’ in terms of treatment for thier child. I pointed out that the consideration of whether a form of treatment is ethical is part of the clinical reasoning of service providers (although thats not to say all service providers are therefore ethical), and whether or not a treatment is seen as ethical or lawful by parties other than the parent is a consideration.

    Any intevention that was in breach of the ADA or any other law, would be ethically untenable and thus deserve serious consideration in the ethical stream of clinical reasoning. I doubt “The parents told me it was okay” would be much of a defence in either an applicable court or professional hearing.

    My statements are not in conflict with the ADA, to my knowledge. I’m utterly perplexed as to how my statements are ‘materially false’ due to ommission of a law which does not apply, would be part of the very processes I mention if it did, and which appears to be supporting my posistion that parents are not the only people that can decide what is ‘right’ in regards the treatment of children.

    Ultimately, the over-reaching point – that being a parent and deciding whats best for your own child on a day by day basis is not the same as discussing whats best for people with autism on the (inter)national level in the long term, and vice versa – seems to have been lost in all this silly kerfuffle.

    See you after Christmas.

  15. Dedj December 25, 2009 at 01:36 #

    “On what basis, then, would parents decide what to do?”

    I’d have to echo Mr Andrews advice. He’s significantly better and more extensively qualified and experienced than me, by a multiple factor. Also, his work has been formally referenced to me in multiple settings, by persons of vastly different vocations.

    “You’re saying it’s up to parents to choose what to do, but not up to parents to decide what is right?”

    Parents have the right to decide what to do, but does this mean that what ever they do to thier child is therefore advisable? Legal? Moral? Of course not, just because you’re a parent doesn’t make every decision ‘right’ no matter how much you want it to be.

    High level discussions about appropriate treatments for different conditions occur all the time, yet the initial person asserted that only parents have any right to decide whats best for their child. In effect, they ignored the idea that ethics and evidence of ineffectiveness/lack of evidence have any bearing on whether or not any other person can hold an opinion on what they think is best for any particular set or subset of people with autism.

    This is clearly unsupportable, as such discussions are neccissary to determine the viability of any particular treatment, and occur within the literature. Indeed, the person concerned has put forth the opinions of people who are NOT autistic or autism parents as valid opinions several times.

    See you all in a few days.

  16. Lisa December 25, 2009 at 02:43 #

    Huh. My experience (granted it was ten years ago) was in essence a diagnosis and a handshake. There was no clinical advice, other than “he should probably be in a small classroom setting” (he was then three years old). No one mentioned ABA; no one mentioned floortime; no one mentioned any treatments at all outside of speech therapy, OT (handwriting) and PT (gross motor).

    Speaking with the same (prestigious) developmental pediatrician recently during an interview (and reading a review of findings since that time by the same individual and others), I have the strong sense that I’d get the same handshake today.

    So far as I can tell, unless parents go to a DAN! practitioner who is more than happy to tell them precisely what to do (chelation, special diets, etc.), few practitioners provide the kind of clear, patient-specific direction that would allow parents to take action.

    David recommends “advice on interventions and likely outcomes, as known from the research, which is how it should be done… the parents get to be able to make choices based on what the professional team members know of how and why any strategy works.” I would be thrilled to know that developmental pediatricians offer such advice – outside of saying something like “ABA is a good approach; hope you can get that provided and paid for.”

    And while I’m not against ABA as it’s presently practiced (including naturalistic settings, emotional reinforcement, etc.), I have to say that even now I would not choose discrete trials therapy for my son. I strongly believe that developmental therapy, which I learned about through my own research and provided almost entirely on my own after reading books and watching videos, is a more appropriate intervention for a young child with relatively mild/moderate symptoms.

    I guess this is a mom choosing what she feels is best for her child – but quite honestly, I chose without the benefit of hearing anything else from anyone else, despite going to developmental pediatricians at two very major hospitals. My guess is that I am not alone in my experience.

    Lisa

  17. Lisa December 25, 2009 at 02:46 #

    BTW – never did read what that “initial person” said about a parent’s right to choose. I’m thinking that most of us on this list would take a more moderate approach. That is: it’s appropriate for a parent to make choices on his/her child’s behalf, but those choices should be reflective of a true understanding of the child’s needs and of therapies/treatments which are known to be appropriate and effective.

    In other words: treating autism by getting stem cell therapy in China is probably not the best parental choice!

    Merry Christmas folks!

    Lisa

  18. EquiisSavant December 25, 2009 at 05:54 #

    I see … “silly kerfuffle” explains why you are either British, from a former colony, or in the EU. And that explains why your most important point is that your ‘are outside the U.S.’ but feel an emotional need to comment on U.S. Neurodiversity Autism spectrum politics ? Hmmmmm … do you vote in the U.S. ?? Or are you a mere bystander ?

    I believe the topic was Ari Ne’eman and U.S. Neurodiversity Autism spectrum politics — which was the topic I addressed. But now you want to talk about World autism interventions that parents are choosing.

    It would be nice if adults with Autism were even given the luxury number of choices Lisa Jo and some others are talking about. We don’t even get that. But all of you non-autistics commenting here want to evade the topic and you DEFINITELY want to evade the topic of adults with Autism in the U.S.

    I am aware dedj, the U.K. is light years ahead of the U.S. in counting and addressing the needs of its adult Autism situation. Also, that the EU has a Charter on People With Autism. Unfortunately, under the past Bush Administration, the U.S. Courts give a whit about international laws, rights, or how other Countries do things when it comes to the Autism spectrum. So if your impression is far more positive because that is how it is outside the U.S., please don’t extrapolate it to be as positive in the U.S. It is not. Adults with autism spectrum conditions die on American streets because there is no Autism access to food stamps, housing, health care, disability benefits, or any single item necessary for human survival.

    So, you can see why adults with Autism can’t stand it when parents like Lisa jo who have it a lot more cushy start whining — at least her children have food, shelter, IEPs, parents, and a few problems with the medical establishment.

    I’m not saying Lisa Jo doesn’t raise some justifiable points regarding the doctors — but again a poor-woe-is-me whine; what does Lisa Jo think it was like for parents in the 1950s-1960s who were subjected to the McCarthism “Refrigerator Mother” ‘Red Scare’ and would lose their jobs and university careers if it were known they hid their child’s Autism diagnosis ? Or that when these parents hid their child’s Autism diagnosis, in many U.S. states the parents were committing a CRIME for not telling authorities and institutionalizing the autistic child ? Do you think my generation of Autism spectrum people even got one single item of Autism interventions ?

    I do agree it would be nice even for adults with Autism to be able to get the kind of answer Lisa Jo wants. Where I live in Florida, I have been told there is basically only one adult Autism brain neurologist for the entire population of adults with Autism in the state. So we adults are nowhere near even getting the help Lisa Jo gets.

    But if I am right Lisa Jo writes out of Miami ??, then if that is the case, she certainly knows about Florida’s Republican GOP Executive agencies intervening under Republican Governors to impose a guardian even between parents and a child with a cognitive condition ? it has happened, last I recall under Jeb Bush. It is what is commonly known as the state exercising its parens patrie power. If Lisa Jo thinks Florida would not start doing this to second-guess parents choices about Autism treatments for their children, I would not be so sure. I have even seen judges take away a parent’s power over their own children for smoking or creating an obesity environment. But whatever Lisa Jo says, it must be right, because I’m autistic and she is not.

    Dedj, are you saying you live outside the U.S. but know U.S. law and the Americans with Disabilities Act so well you are going to tell an American autistic savant law school graduate that you know more about it than she does ? I will belive you if, and only if, (1.) you are a diagnosed autistic savant also, and (2.) you have a U.S. ABA-accredited law degree and 20 years working in the Americans With Disabilities Act.

  19. Mike Stanton December 26, 2009 at 01:24 #

    Parental choice in any other area than autism does not mean that parents get to choose the treatments and therapies for their children. It usually means that if and only if there is more than one option the specialist will outline the available options including potential drawbacks or dangers and the parent will then be in a position to make an informed choice on behalf of their child. Informed consent is not the same as freedom of choice.

    The problem is that a cottage industry of alternative therapists has latched onto the autism community and is promoting therapies which have no theoretical basis. DAN and ARI are the most important representatives of this tendency.

    The fact that the mainstream makes mistakes in relation to autism may explain why parents turn to DAN. That does not mean DAN have anything to offer. It does mean that the mainstream should up their game.

    In the UK the National Autistic Society has developed a programme of intervention for parents – It is called The Help Programme and if local authority children’s services implemented this model a lot less parents would be tempted by the quackery promoted by DAN and its imitators.

  20. David N. Andrews M. Ed., C. P. S. E. December 26, 2009 at 04:27 #

    “I would be thrilled to know that developmental pediatricians offer such advice – outside of saying something like ‘ABA is a good approach; hope you can get that provided and paid for.'”

    Given their titles or specialities, I’m surprised that any of them don’t seem to know more than that!

    “I guess this is a mom choosing what she feels is best for her child – but quite honestly, I chose without the benefit of hearing anything else from anyone else, despite going to developmental pediatricians at two very major hospitals.”

    This is saddening: two major hospitals cannot tell you where to go or what to do after your child’s diagnosis to get the best support … no wonder the chelationist and the Geiers all do so well there in America!

    “My guess is that I am not alone in my experience.”

    I’d say you’re probably not; me and my ex-wife took the child and adolescent psychology courses we did because of our own child, who is herself autistic… as are we. And we knew that Finland does not have such expertise as our training gives us (we’re both applied psychologists in the field of education and autism), and indeed in a meeting recently, when a snotty-nosed cow of a psychiatric nurse asked the hospital neuro-psychologist where the expertise was that would help our daughter, the neuro-psychologist giggled a little embarrassedly and pointed to my ex-wife and I, saying “They’ve got it!”

    Many parents are not as fortunate as we are, though, and they have to go through it all not having been given any proper training in parenting an autistic child (and let me tell you… it’s a minefield even when you know all this stuff).

    “That is: it’s appropriate for a parent to make choices on his/her child’s behalf, but those choices should be reflective of a true understanding of the child’s needs and of therapies/treatments which are known to be appropriate and effective.”

    Absolutely. Parent training courses (such as the Early Bird programme, developed by the National Autistic Society) have been shown to be very useful since they involve training the parents what to look for and how to deal with what they find rather than training the child to essentially maintain an outwardly ‘normal’ front (whatever the hell ‘normal’ actually is!) …

    “In other words: treating autism by getting stem cell therapy in China is probably not the best parental choice!”

    Spot on.

  21. Lisa December 26, 2009 at 13:49 #

    David – didn’t know about the Early Bird program, which sounds like a great idea. I’m also aware of a few other “DIY” type programs available (the new “rethinking autism” website for ABA, videos for basic floortime, etc).

    If anyone here knows of other really solid parent training programs that are available (not degree programs but DIY parent training for autism therapy), would you mind sharing with me off this list? I’m working on an article on the subject!

    Thanks so much,

    Lisa Rudy
    autism.guide@about.com

  22. Lisa December 26, 2009 at 18:42 #

    Equiis – I’m not attacking Ari. I really don’t know Ari, and based on his record and statements I’d say he does a pretty good job of representing a viewpoint that is shared by many but not by all.

    The things I’ve said about parent perspectives are intended to clarify why some people feel uncomfortable with Ari’s perspective. In fact, some people DO feel uncomfortable with Ari’s perspective. That doesn’t make them right or wrong: it is simply that some people disagree.

    I’d need to research the law more deeply to respond to some of what you’ve said about insurance in florida or the ADA relative to sensory issues. I find it hard to believe that people with disabilities can, for example, sue a company over using fluorescent lights (which buzz), etc. – but I could easily be wrong. Similarly, I find it hard to believe that an insurance company could be sued for not underwriting the cost of HBOT for autism – but again, I could certainly be wrong.

    I would love to think that the majority of verbal and non-verbal people with autism can speak on their own behalf, express their own political opinions, and take action. If you’re part of such a community of people with autism who can but have not yet made their opinions known, I hope you’ll encourage them to do so. The truth is that I hear on the About.com site from lots and lots of parents, some therapists, and only a very few adults on the spectrum.

    It would be absolutely terrific to hear more from adults on the spectrum on forums like this one.

    Lisa

  23. Kassiane December 26, 2009 at 20:33 #

    …actually, I’m pretty sure them being uncomfortable because he is autistic IS wrong.

    It’s called ableism.

    Them being uncomfortable because he’s autistic and they’ve been willfully misinformed about what he actually thinks makes them more wrong. It’s not just bigotry, but the ‘differences of opinion’ aren’t based in fact. It’s pure xenophobia.

  24. Billy December 26, 2009 at 23:28 #

    I’m aware Ne’eman and the others don’t still deny autism is a disability. Yet they fundamentally don’t acknowledge disability when they claim that the disability is only caused by society. Nobody should really just say autism is a disability, since there are some on the spectrum who really aren’t disabled.

    “In my mind, there is a group of people who have successfully created a wonderful catch-22. Anyone capable of participating in the debate is too “abled” to represent children, like my own, who are too disabled to represent themselves.” ”
    As “neurotypical” parents, are we, then, too “abled” to truly represent our children?”

    There’s a point there. I don’t think parents are the ideal representatives and participants in the issue, but I think that currently no other group with helpful motivations capable of advocating, is as numerous as parents of those who are highly disabed. I think it would be ideal if representatives came from among those least abled.

  25. Dedj December 28, 2009 at 01:19 #

    EquiisSavant – I honestly have no idea what you think I’m talking about. Your depiction of my arguement is so devoid of reference to the material of my posts that I have to wonder what it is about my posts that has indicated that the material within yours is relevant.

    “And that explains why your most important point is that your ‘are outside the U.S.’ but feel an emotional need to comment on U.S. Neurodiversity Autism spectrum politics ?”

    My most important point was certainly not that I was outside the US, but that my post was not ‘materially false’, for the reasons mentioned.

    “I believe the topic was Ari Ne’eman and U.S. Neurodiversity Autism spectrum politics—which was the topic I addressed.”

    My original post was in response to a post talking about a strawmen arguement that has been used against persons participating in the general discussion about autism politics. I gave a further example of a arguement I’d seen from a parent who is known to be very much opposed to the whole idea of ND, and is very much opposed to Ari’s nomination. The subsequent dicussion was in response to direct questions from Lisa.

    “But all of you non-autistics commenting here”

    I’m formally diagnosed with Aspergers, some may count that as a form of autism.

    “Dedj, are you saying you live outside the U.S. but know U.S. law and the Americans with Disabilities Act so well you are going to tell an American autistic savant law school graduate that you know more about it than she does ?”

    No, and I’ve never questioned your knowledge of the ADA. You may well be a qualified person to ask and have an extensive knowledge of the ADA.

    However, this is irrelevant to the discussion of strawman arguements. People other than parents have the right to discuss the ethics (NOT just medical ethics) and implication of different treatment approaches in regards people with autism.

  26. EquiisSavant December 28, 2009 at 01:56 #

    I realize there are some new comments to my earlier views, and I will be commenting upon them. I was in the middle of creating a new Autistic savant artwork called “Two Rhinoceroses,” pencil w/color oil pencil overlay sketch, that I have posted on my FB Fan page and my website. I am also on deadline for a couple New Years Day law clerking projects. So pardon my slow reply. I do think Lisa Jo and others have offered up some good points, and I have some further insights and suggestions to add.

    In the meantime, Dedj, I will do what they train us lawyers to do in law school — address your first issue, which renders the remainder of your prolix Aspie piece moot until the first issue is addressed. That is: my comments addressed the topic of the initial blog post, while yours missed that and now you want to qibble whether I addressed some of your tangents and sidetracked issues.

    First, please address the blog topic; then, and only, then will I address whether or not I properly covered all of your many difficulties being Aspie with language you seem to find so distressing.

    I the meantime, I might highly recommend the best language and communication improvement course any Aspie or autistic savant can enroll themselves in is law school — otherwise known as “Autism Language Bootcamp 101.” You might want to give it a try !

  27. passionlessDrone December 28, 2009 at 19:09 #

    Hello friends –

    Trying to speak only for myself, to my mind the biggest problem with the ‘disability but also a difference’ argument is that it rarely seems to acknowledge that there are often manifestations of autism that present problems so debilitating that they do not lend themselves to a solution involving additional acceptance. These are problems that need to be fixed, because there is no means by which accepting them helps anyone, especially the person with a diagnosis of autism. Inevitably, by nature of the nature of these types of problems, people that are capable of making the disability but also a difference arguement do not exhibit this level of problem. It is a hierarchy of needs, only once you can understand that your biggest problems are generated by others, can you begin to make that argument. I think this is what forms the basis of much disagreement.

    By way of example, my son continues not to seem to have the ability to grasp any abstract concept; i.e., that the number five is more than the number two, that tomorrow means something different than yesterday, that a wrapped gift is intended to be opened, as opposed to a colored box to be cast aside. Only someone with a commanding grasp of all of these concepts, and a thousand more, is able to compose eloquent dissertations regarding the need for greater acceptance of autism as a difference.

    What good would any amount of legislation or acceptance do for anyone’s child who is unable to navigate the basic concepts of abstraction? But to get to a point where these skills might be possible, we must consider means to increase the communicative ability; i.e., fixing one of the core concepts of autism, and this is something that I’ve yet to see accepted as a valid path by people who are in agreement with Ari.

    I do believe that greater acceptance is a laudable goal, but as long as its proponents exclude the possibility of changing autism as well, this will be a schism within our community.

    – pD

  28. kwombles December 29, 2009 at 00:09 #

    pD,

    Since no one is advocating not offering assistance or seeking to minimize the challenges those who are disabled face, you are putting forth the classic argument that the “biomedical” side of things likes to say of folks who argue that dangerous, untested treatments are not an acceptable way to help children with autism.

    As long as there are people who believe vaccines cause autism by way of mercury poisoning or “measles in the gut” and that lupron, HBOT, chelation, nicotine patches, marijuana, IVIG are all acceptable to do to children simply because they have autism, there will be a definite schism in our community.

  29. passionlessDrone December 29, 2009 at 02:56 #

    Hi Kwombles –

    Since no one is advocating not offering assistance or seeking to minimize the challenges those who are disabled face, you are putting forth the classic argument that the “biomedical” side of things likes to say of folks who argue that dangerous, untested treatments are not an acceptable way to help children with autism.

    But the reality of what is being advocated for in these situations, “offering assistance or seeking to minimize challenges” is functionally bankrupt.

    What you have typed above make for good taglines, especially if we are talking about finding ways to help people with the skills to successfully navigate the Internet, but are without utility for those without those capacities. It is cotton candy assistance, sweetly flavored, but ultimately, made of air.

    How do you propose we minimize the challenges that someone faces if they cannot understand anything abstract? In what way do we offer assistance to someone who does not understand the concept of the future or the past, or numbers, or questions like ‘where does it hurt?’

    – pD

  30. kwombles December 29, 2009 at 03:14 #

    pD,

    Do you think that you are the only parent who comments here who deals with a child who is hyperliteral, unable to understand most if not all abstract concepts and untethered in time?

    Where treatments or therapies do not exist that can overcome the difficulties the individual faces, then should it not be society that adjusts and adapts so that those individuals have the care, the respect, the support, and the acceptance they need so that they can lead satisfying lives? Seriously. Some disabilities cannot be overcome with today’s science. Where it can’t, it is our obligation as a society to do better, to do more, and it sure as hell is our job as parents to do what we can to make the world a more accomodating place.

    If you don’t think that’s the case, perhaps you can explain why.

  31. passionlessDrone December 29, 2009 at 15:14 #

    Hi Kwombles –

    Do you think that you are the only parent who comments here who deals with a child who is hyperliteral, unable to understand most if not all abstract concepts and untethered in time?

    I don’t know. (?) I don’t know if I’ve ever seen you mention your child; does he/she sound like the descriptions of my son? If I remember correctly, Kev’s daughter may have some similarities to my child. (?) In either case, whats your point?

    Where treatments or therapies do not exist that can overcome the difficulties the individual faces, then should it not be society that adjusts and adapts so that those individuals have the care, the respect, the support, and the acceptance they need so that they can lead satisfying lives?

    You have a lot more trust in society than I do. But the larger issue (to me) is that the foundation behind the ‘dissability and a difference’ argument is that therapies that overcome dissabilities should not be pursued, because they are about changing autism, changing ‘the difference’. This may not apply to you, I really don’t know.

    What’s your take on a treatment that would completely ameliorate the deficits I described, even if it wound up causing a child not to qualify as autistic? A treatment that meant a child wouldn’t need care, or acceptance, or services, because they’d be able to provide for themselves, and their diagnosis could be discarded.

    While such a treatment doesn’t exist today, I get the feeling that some folks don’t think such a treatment would be a good idea in any timeframe.

    Some disabilities cannot be overcome with today’s science. Where it can’t, it is our obligation as a society to do better, to do more, and it sure as hell is our job as parents to do what we can to make the world a more accomodating place.

    I tried to address this above, but what about tomorrows science? What we can do in the future will depend on how we allocate resources today, and unless we’ve got a cure in the crosshairs, today’s science won’t be moving forward.

    You seem to think you can change the world, I’m just hoping to change my son. We both may suffer from delusions of grandeur.

    – pD

  32. kwombles December 29, 2009 at 15:36 #

    pD,

    You post enough, which implies you read enough, at this site that you should recognize that your arguments aren’t accurate, if you really believe that those who favor a neurodiverse approach would not want to help remove those impediments that prevent individuals from becoming independent.

    My point that you are not the only parent who has children with those difficulties harkens back to your argument that we are a bunch of do-nothings who espouse platitudes.

    It’s not society I have trust in; it obviously has to change to better accomodate. I believe that there are enough parents and family members out there who love and respect their children and who want to change society so that it is accepting of their children, to give them a place in the world as they are, as well as enough adults who are disabled, who will work to make these societal changes. Obviously that is not all parents, nor all individuals on the spectrum.

    I’m pretty sure I don’t suffer from delusions of grandeur. I don’t think I can move the world alone, but I’m by god going to try with the help of my friends.

    You’ve left me with a pretty picture of where you stand, though. I can see that you are apparently part of the society that needs to be changed to accept and accomodate the disabled as equal, valuable members just as they are. What tomorrow’s science will bring is irrelevant to those who suffer today. What exactly are you doing to relieve that suffering now?

  33. passionlessDrone December 29, 2009 at 16:43 #

    Hi Kwombles –

    You post enough, which implies you read enough, at this site that you should recognize that your arguments aren’t accurate, if you really believe that those who favor a neurodiverse approach would not want to help remove those impediments that prevent individuals from becoming independent.

    I’ve been called a ‘curebie’ here on more than one occassion. It was meant as an insult. We need go no further than the ‘autism awards thread’ to find someone proudly nominating themselves as an autism personality of the year for attending IAAC meetings with the express intent of trying to steer research ‘away from causes and cures’. Securing a lifetimes worth of ‘services’ at the expense of researching causation isn’t about removing impediments, it is about finding enormously expensive and logistically difficult ways around them. Maybe you should do some more reading around here.

    My point that you are not the only parent who has children with those difficulties harkens back to your argument that we are a bunch of do-nothings who espouse platitudes.

    It isn’t my fault that you can’t define how ‘greater acceptance’ will meaningfully help someone who cannot understand concepts like the past or the future in ways other than adoption of a lifestyle of dependence. There is a difference between doing nothing, and doing something that won’t have any impact.

    I can see that you are apparently part of the society that needs to be changed to accept and accomodate the disabled as equal, valuable members just as they are.

    I’m more worried about nature, which has little concern for the fragile constructs of society and quickly fills a vaccuum not protected by constant adult supervision.

    What tomorrow’s science will bring is irrelevant to those who suffer today. What exactly are you doing to relieve that suffering now?

    Why is it irrelevant? Maybe we should just apply all of our resources towards ‘services’ and ‘acceptance’ for people with Alzheimers, and stop looking for causes and cures?

    As for what I’m doing now, I’ve got a sample of one that is getting a mix of ABA/Speech/OT/RDI/whole food diet/biomed/and a whole lot of excercise. Also, I’m tring to cure autism on the side.

    – pD

    • Sullivan January 1, 2010 at 08:42 #

      We need go no further than the ‘autism awards thread’ to find someone proudly nominating themselves as an autism personality of the year for attending IAAC meetings with the express intent of trying to steer research ‘away from causes and cures’. Securing a lifetimes worth of ‘services’ at the expense of researching causation isn’t about removing impediments, it is about finding enormously expensive and logistically difficult ways around them. Maybe you should do some more reading around here.

      Let’s look at what was actually said in that comment:

      I nominate myself for being the autistic person who has gone to the most IACC meetings (including actual IACC members), promoting a re-focus of research away from finding causes and cures and toward services, supports, and practical outcomes for autistic people, our families and communities, throughout our lifespans. So… IACC Attendee of the Year.

      pD-
      I guess you conisder “steer away” the same as “refocus”. I don’t find the phrases equivalent.

      Nor do I consider your assesment of what was stated in the comment an accurate representation. Since a quote was a mere copy/paste away, I don’t see why you didn’t do that.

      My view (not necessarily shared by the above quoted commenter):

      Let’s see, we can focus 95% of the funding on areas other than adults, or we can acknowledge the fact that (a) most autistics alive today are almost certainly adults and (b) most autistic children today will almost certainly become autistic adults.

      I’m OK with a “refocus” towards “practical outcomes” for “autistic people” “throughout the lifespan”. Maybe the term “rebalance the research portfolio” would be better?

      If people want to lobby for cures, go ahead. But history tells us that parents have been counting on a cure for decades–only to find that they didn’t prepare for their children to be adults.

  34. Billy December 29, 2009 at 19:25 #

    kwombles, there’s no set of circumstances that will guarantee that satisfying lives can be led by all. The supposed lack of capability to produce cures with today’s science, doesn’t make it possible or significantly helpful for society to “adjust” and to give support, acceptance, and all of those corny patronizing attitudes. It’s impossible to have a same quality of life while mentally disabled. It is inevitably a misfortune. ND won’t directly admit that having capabilities is in integral part of a satisfying life. They ignore that when they imply that things will be fine if all were just nice to those who are mentally impaired.

    It’s not possible to be an “equal member” of society when mentally disabled, as it inevitably leads to dependence on others, who exclusively dominate and consequently control the intellectual capacity of society, thereby appropriating its fruits and opportunities, and gain the pride and satisfaction. Society can’t do anything about that. Anyway, there’s minimal indication that today’s science isn’t ready to embark on cures for mental disabilities. Think of all the scientific and intellectual resources in general used on all kinds of projects, many of which are pointless and base. Not enough attention and resources have been focused on research for cures. That should be society’s responsibility.

  35. Dedj January 1, 2010 at 07:38 #

    “That is: my comments addressed the topic of the initial blog post, while yours missed that and now you want to qibble whether I addressed some of your tangents and sidetracked issues.”

    My posts followed on from the discussion that was arising within the thread, and were in context. I did not claim they addresed the initial blog post, nor were they intended to, nor are they required to. Posts can still be relevant without being strictly limited to only that which is expressely stated in the initial blog post.

    Even so, your own opinion of the inital topic was “I believe the topic was Ari Ne’eman and U.S. Neurodiversity Autism spectrum politics”

    Lisa was discussing opposition to Ari, I responded to that by adding further relevant discussion. Both myself and Lisa (and subsequently myself and Sullivan) were posting on topic.

    “First, please address the blog topic; then, and only, then will I address whether or not I properly covered all of your many difficulties being Aspie with language you seem to find so distressing.”

    It’s not up to you what I address, my posts were in the context of the developing discussion, and did not mention being distressed by language difficulties. Although I am often distressed by peoples reactions to my language difficulties, I am not aware of having mentioned them in this thread.

    I do not consider your responses to have accurately depicted the content or nature of my posts, to the point where I’m having difficulty seeing where I have stated or implied the arguements and viewpoints you have attributed to me.

    Nor do I deem your demand that I ‘must’ comment directly on the initial post in order to be allowed to participate in the resultant discussion to be reasonable.

    As such I have no choice but to ask you to stop responding to me.

  36. EquiisSavant January 1, 2010 at 11:22 #

    I should be able to post more of my replies as I promised sometime tomorrow on this important subject. A few of the newer comments are insightful. I have been busy with family New Years Eve activities, but New Years Day looks free and clear.

    In the meantime He-Who-Doesn’t-Want-To-Be-Responded-To should NEVER write in that meandering, associational, tangent-style to any Court of Law, Judge, or Law Prof., because … THEY WON’T READ PAST THE FISRT FEW LINES. It helps to put the most important point first.

    Also, He-Who-Doesn’t-Want-To-Be-Responded-To should make an effort to get over the unscholarly insecurities of attacking others while blocking debate for which He-Who’s coping mechanisms go on FAIL. Such tactics do not add value and worth to the debate.

    On a more general note, I am an avid Internet commenter on several forums, have Twitter and FB, FB Fan page, and Autistic Savant website responsibilities, as well as law clerk. I am not so concerned with imposing some order on who said what, as much as what my comments and the comments of others contribute to my ability to advocate for adults with Autism in the U.S. I am a public figure, and have many people asking me every day about complicated issues that divide the U.S. Autism community and how we all might resolve them.

  37. EquiisSavant January 1, 2010 at 12:10 #

    Sullivan, I’ll respond more late afternoon New Years Day EST. I’m quite nocturnal, and on East Coast U.S. it is on the other side of the Atlantic and past time for me to head off for a little more sleep.

    However,regarding THIS statement:

    “Let’s see, we can focus 95% of the funding on areas other than adults, or we can acknowledge the fact that (a) most autistics alive today are almost certainly adults and (b) most autistic children today will almost certainly become autistic adults.”

    … at least in the U.S., what the parents are asking for — to hog up ALL (100%) of the Autism funding and leave the adults with Autism with none, is patently unconstitutional and cannot happen. It would be taxation without representation on the adult Autism population to pay for the children with Autism. The funding has to be in proportion to Autism population age bracket groups, wherever the Bell Curve lies. You are saying most of the Autism population are adults. This would result in more of the Autism funding having to be allocated to the adult Autism population in the U.S. Not only do we have a U.S. constitution, but the U.S. is also signatory to and has ratified a number of human rights treaties.

    The problem in the U.S. is we have no Census count of the adult Autism population. Although I agree with you about there being MANY more adults with Autism than children. The problem with finding them in the U.S. to count is:

    (1.) up until (even in some states) appx. 1976, it was a crime that could get parents locked up in jail not to turn their children with Autism over to the institutions;
    (2.) as a result, many parents in the U.S. hid their children with Autism from the authorities and just entered them in mainstream public schools to sink or swim;
    (3.) additionally, the parents were having their jobs, careers, and professions ruined by a particulary pernicious form of McCarthyism by being called “Refrigerator Mothers,” so the hidden children with Autism had to remain “in the Closet” (as gays and lesbians like to say);
    (3.) During first Gov./then Pres. Reagan, after Mr. Reagan watched “One Flew Over the Cuckoo’s Nest,” all the adults with Autism got dumped out of the institutions directly onto American streets with NO support or services and many unable to access the help that was there — resulting in HIGH numbers running afoul of criminal law violations and being warehoused in the jails, or going into chronic perpetual homelessness until they died and continue to die;
    (4.) some Aspies and higher functioning Autistics and Autistic savants managed to hang on by sheer donkey-style planting their feet in the real World and actually surviving, though, for a very high number, not very well.

    The U.K. is at least counting the adults with Autism and taking steps forward toward addressing their plight. The adults with Autism in the U.S. are all felling like we should be getting ready to move over to the U.K. if Ari and others cannot get the U.S. to count all the U.S. adults with Autism population and take the same steps forward toward addressing our plight.

    The current parents who are duking it out with the adult Autism population to rob the U.S. adults with Autism of all funding by taxation without representation to hog it up are traveling down not only an unconstitutional path, but one that is fiscally unsound and would bankrupt America as a result of the increased costs it will ultimately cause due to inefficient misallocation of resources.

    If the U.S. is headed toward difficulties handling its interest on the National Debt, one can only IMAGINE the nightmares when the current parents-misallocation formula careens U.S. interest payments to run amok rising out of control — while ENORMOUS roving bands of feral adults with Autism plague the Country similar to the bandits of Europe’s Dark Ages/ Medieval era following collapse of the Roman Empire (and our governments are unable to raise the funds for law enforcement to keep the Peace).

    You are providing much insight, Sullivan. Thx !

    Equiis

  38. EquiisSavant January 1, 2010 at 12:17 #

    Sullivan, also Thx for THIS insight:

    “If people want to lobby for cures, go ahead. But history tells us that parents have been counting on a cure for decades—only to find that they didn’t prepare for their children to be adults.”

    You are so right ! At this point, with Obama and Bernanke just having barely escaped a U.S. Depression and millions of American families losing their homes to the mortgage debacle and some of the ponzi schemes that have gone down (e.g. Madoff), now is simply NOT the time to be throwing good money after bad.

    Its okay to ask for cures for those who want them, but these parents have no right to drag the U.S. and every American back down into Bankruptcy.

    We need to be more sensible than that.

  39. passionlessDrone January 1, 2010 at 16:23 #

    Hi Sullivan –

    I guess you conisder “steer away” the same as “refocus”. I don’t find the phrases equivalent.

    Does either of them promote looking for a cause or a cure? If our measurable endpoint is applying resources towards causes and a cure, there isn’t much difference to my mind.

    As for repasting, I just was too lazy to open another browser.

    Let’s see, we can focus 95% of the funding on areas other than adults, or we can acknowledge the fact that (a) most autistics alive today are almost certainly adults and (b) most autistic children today will almost certainly become autistic adults.

    I’d agree with (b), but not with (a). But even if I did agree with (a), you have no way of quantifying how much of our funding currently is going to “areas other than adults”, whatever that means. Maybe that’s my problem (or one of them), I don’t know what such funding or research would look like, other than “greater services and supports”; and I don’t even really know what that would look like.

    So, if we could apply 95% of funding towards “practical outcomes for autistic people throughout the lifespan”, what would that look like? This is a genuine question, and the creation of a concise answer might actually be very useful in furthering meaningfull discussions.

    What really bothers me about this idea, however, is the potential to lose progess in true advances. Consider the advances in reversing fragile x in animal models. This is exactly the kind of research that is part and parcel with funding for a cause and a cure. Do you really think we’d be in a better place if that research had not been funded, so that we could spend more resources trying to help adults with fragile x get more supports and services? This is precisely what will happen if people are successfull re-focusing our priorities; it is terrifying.

    If people want to lobby for cures, go ahead. But history tells us that parents have been counting on a cure for decades—only to find that they didn’t prepare for their children to be adults.

    Its a false analogy to compare what is happening now to what was happening decades ago for a variety of reasons.

    – pD

    • Sullivan January 1, 2010 at 20:54 #

      I’d agree with (b), but not with (a).

      (A) was my assertion that most autistics are likely adults. This is supported by the recent study out of the UK showing a prevalence of about 1% in adults.

      Is it definitely proven? No. But, to paraphrase Dr. Insel, it is up to those who disagree to prove their point. At this place in time, we either accept this as a good possibility or we risk ignoring a large segment of the autistic population.

      Now, for those who actively deny the existence of unreported adults, I find them to be extremely irresponsible. They would sacrifice possibly helping a large segment of the autistic community for their own political gain.

      I don’t know what such funding or research would look like, other than “greater services and supports”; and I don’t even really know what that would look like.

      The funding would look like money…the research would look like people first finding the unidentified autistics and second finding out what needs they have that are not being supported.

      Do you really think we’d be in a better place if that research had not been funded

      Gotta call out the straw-man argument here. I am not saying it shouldn’t be funded. Never have. But, if it makes it easier to support what is an unsupportable point for you, feel free. “Re Focus”. How hard is it to understand that one can focus on one area without ignoring another? You are smarter than that.

      Are the needs of adults totally ignored now, with the focus on causes and cures? No.

      As to my “false analogy”, it appears that is one of the many points you misunderstand.

  40. Joseph January 1, 2010 at 16:39 #

    I’d agree with (b), but not with (a).

    You can try to disagree with reality, but it’s still reality. Denial of the existence of autistic adults in large numbers (diagnosed and undiagnosed) is not only inconsistent with the data that is available, but it’s also most unhelpful in practical terms, both to autistic adults and to your own long-term interests.

  41. Dedj January 1, 2010 at 23:50 #

    EquiisSavant, the reason why I requested that you do not respond to me is because your responses have been characterised by the irrelevant side tracking and uncivil behaviour that is awash through your last response.

    All I requested was that you stick to the content of my actual posts. You failed to accurately potray my posts and failed to accurately address any corrections.

    I’m at a loss to what you think my initial point was. Parents of autistic children are not the only ones who can advocate for autistic people on the local or national level, nor are they the only ones that have a say in what is appropriate, legal, ethical, beneficial or clinically indicated in regards to people with autism.

    Due to the lack of appropriate content and apparent relevance of your previous responses, as well as your unreasonable demands and needless insults, any further response will be treated as irrelevant.

    Toodles.

  42. EquiisSavant January 4, 2010 at 07:51 #

    Lisa Jo, I finally made it back over here. Some comments.

    “And it’s all too easy for people whose kids are profoundly disabled to feel misrepresented by adults whose autism is clearly much less disabling.:

    I understand this concern, and actually I share it with you. None of the Aspies I know of like Ari, Alex Plank, @4Aspie, John Robinson, etc. seem to have any idea or concept of the extreme difficulty more severely language and other disability impaired people with Autism battle with every day. This is a huge problem for me, because I have never been able to be understood by most people with conventional ways of communicating — I have to have paperless Internet computer, I people label me “diminished capacity” and other idiotic things because they don’t understand the barriers and my Autism needs. Also, I cannot do my own meals preparation, and this has been a lifelong issue — it is not about “teaching” me how; I cannot neurologically handle the performance of those tasks neurologically. I have many other very real neuro-physical issues. So I do share your concern about adult Aspie representation.

    Regarding your statement & entire discussion on:

    “I would be thrilled to tiny pieces to have a qualified expert in my life who could assess my son and say ‘ah ha! here’s a kid who would do best with A and X therapies, as opposed to B and Z therapies. Here’s where to find them, here’s how to pay for them, and here’s how to assess the quality of the therapists you interview.’”

    My criticism is not what you are saying, but only the fact that you are not including adults with Autism in the group having the same identical problems. Only for us, it is far worse. We have no real access to doctors, which makes it worse. If we do manage to get a doctor for a short while, we have many of the same complaints you mention. And I do not think it is a legally justifiable excuse (at least in the U.S.) for our governments to have been informed about Autism by Kanner in 1943, and then just sat around neglecting the Autism spectrum so completely. THAT has harmed more people with Autism and families than probably Agent Orange, DES, Thalidomide, Atomic fallout, and the maladies of Desert Storm I.

    It would be so much more helpful in creating unity in the U.S. Autism movement to kepp saying most of what you are saying, but expand your coverage of these topics to include the adults with Autism. And we are not just age 22 and under — there are many of us of all age spans.

    With regard to this statement:

    “Huh. My experience (granted it was ten years ago) was in essence a diagnosis and a handshake. There was no clinical advice, other than “he should probably be in a small classroom setting” (he was then three years old). No one mentioned ABA; no one mentioned floortime; no one mentioned any treatments at all outside of speech therapy, OT (handwriting) and PT (gross motor).”

    I did not even get that much when I got my re-confirmed Autism DX. In fact, it appears the real reason my doctors abandoned me is BECAUSE of my Autism DX — they just don’t want to serve adults with Autism. That is also discrimination and violates the ADA. In my doctors case, Title II of the ADA, because they are a public university.

    About the florescent buzzing lights — they can set off seizure activity in people with epilepsy and TLE syndomes that exist in at least 25 % of people with Autism. It may not even be a noticeable thing for someone with these problems, but for us, it can set of seizure activity, which is actually a form of physical assault on our sensory systems, and for those reasons violate the ADA. However, businesses are exempt from damage claims under Title III of the ADA and only subject to a forward looking injunction — to eliminate the inaccessible lights.

    It is not as simple as that, however, since anyone who followed the Molski wheelchair access Title III ADA cases knows he coupled the Title II ADA claim with a second count for violation of California’s Unruh Act that DOES allow for money damages. In Florida, the same one-two lawsuit can be duplicated by a Title III claim, with a secind count for per se negligence based on violation of an ADA regulation or statute. In my own life, I usually don’t quibble with businesses, other than try to persuade them to just fix the access problem — there are many competitors. Government access is a different matter, because they handle entitlement benefits people with Autism depend on.

    Billy, I think it also needs to be mentioned regarding “disability” as defined in the U.S. under the Americans With Disabilities Act, your comment below makes no sense and seems ignorant of the legal defition — which answers the entire question.

    “Nobody should really just say autism is a disability, since there are some on the spectrum who really aren’t disabled.”

    A “qualified individual with a disability” is one who is “substantially limited in one or more major life activities,” when looking at the nature, manner/conditions under which it is performed, and duration.

    That legal definition pretty much excludes Aspies who have no real problems fitting into the “normal” World, and includes those on the Autism spectrum who meet the definition.

    In that sense, while I am not certain of Ari’s ADA “protected status,” perhaps some of the other Aspies would not be a “qualified” individual with a “disability.” However, people with Autism and autistic savant such as myself with far more severe deficits would be included as a “qualified” individual with a “disability.”

    It is such a conundrum — at least in the U.S. — that so many Autism advocates and critics untether their debate and discussion from the legal definition parameters.

  43. EquiisSavant January 4, 2010 at 08:09 #

    pDrone, I think you fail to address Autism accommodations (at least in the U.S. under the Americans With Disabilities Act anti-discrimination laws as an alternative choice to “fixing” Autism by means of medications or cures. Some people actually use both together.

    Also, your entire eloquence discussion leaves out the part that some of us — e.g. autistic savant artist types like myself, are non-verbal in paper print, telephone, & most in-person formats, while eloquent only in an Internet computer format. You can’t base an entire advocacy discourse predicated on a wrong assumption that does not specifically account for the mode of Autism communication and how the mode can change whether the person is “HFA” vs. non-verbal — the mode changes the Autism ability level like a chameleon changes color.

    An autistic savant such as myself — and many people with Autism who are ASSUMED not to be able to think of anything abstract — can in fact think; what we cannot do without Autism Internet computer accommdoations and removal of conventional communication modes, is EXPRESS the abstract thoughts we know. Never confuse the difference.

    This is the approach that is the most fiscally and morally practical:

    “Where treatments or therapies do not exist that can overcome the difficulties the individual faces, then should it not be society that adjusts and adapts so that those individuals have the care, the respect, the support, and the acceptance they need so that they can lead satisfying lives? Seriously. Some disabilities cannot be overcome with today’s science. Where it can’t, it is our obligation as a society to do better, to do more, and it sure as hell is our job as parents to do what we can to make the world a more accomodating place.”

    At least in the U.S., it is also what the federal disability anti-discrimination laws require — unfunded federal mandates excepted from 2 U.S.C. Sec. 1503(a), meaning they must be funded by the states in the U.S.

    And THIS is why any adult with Autism in the U.S. who insists on following the rule of law regarding Americans with Disabilities including Autism spectrum conditions, is met with THIS response:

    “Now, for those who actively deny the existence of unreported adults, I find them to be extremely irresponsible. They would sacrifice possibly helping a large segment of the autistic community for their own political gain.”

    Thats why, at least in the U.S. the rule of law under Title II of the ADA and Sec. 504 of the Rehabilitation Act of 1973, ENTITLES adults with Autism spectrum conditions — if “qualified individuals” with “disabilities” to THIS as a remedy:

    “The funding would look like money…the research would look like people first finding the unidentified autistics and second finding out what needs they have that are not being supported.”

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