Better dead than autistic

15 Sep

This is Heidi Roger who is the Treasurer and a founding member of SafeMinds.

Heidi is a firm, firm believer that vaccines cause autism. No shock seeing as she’s a member of SafeMinds.

What is a shock though is her attitude to human life. In an online debate regarding the book Autism’s False Prophets Rogers made the following astounding claim:

…AUTISM is no joke, it is not “oh well” so their kid will work at McDonalds instead of Trump tower, it is a nightmare without end, it is post traumatic stress disorder every day, it is not better than measles, mumps or rubella and maybe even not better than polio.

That’s right, autism is worse than Polio which can leave some kids needing an iron lung is better than autism.

Measles which has left two teenagers in the UK dead in the last two years and still kills hudreds of thousands worldwide is better than autism.

I beg to differ. Its my opinion that my autistic child is in a much better place than some poor child in an iron lung.

But then, later on, Roger topped even this heartless statement with one so heartless and chilling it made me catch my breath:

Death may be better than autism in some cases….

Is that an official position of SafeMinds I wonder? That death ‘may’ be better than autism. If anyone has any doubts about why I and others feel it necessary to devote so much time blogging against these peoples beliefs you have it encapsulated right there. Death is not better than autism.

On the homepage of this site is a pink ribbon. If you click on that ribbon you will see some photos of Katie McCarron. Katie was murdered by her mother. Her mothers defence was that death was better than autism.

Katie’s family didn’t feel that way. Her Dad, her grandma and her grandpa didn’t feel that way. I have had the pleasure of meeting her dad and grandpa and I know that they loved Katie just as she was and that what was done to Katie was a violation. To even discuss the idea that death is better than autism is a violation. How someone who is parent to an autistic child can even suggest that death is better than autism is quite frankly beyond me.

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65 Responses to “Better dead than autistic”

  1. Jeanette September 15, 2008 at 14:31 #

    Gosh,
    I blogged about a family who puts their child through all sorts of procedures, just to “fix” him.
    Daddy got really mad at me….but, I stand by my blog.
    I am appalled by some things a parent will go through to “get rid of the Autism”, as if the child was disposable as well.
    It breaks my heart….imagine how the child feels.

    Jeanette

  2. Joseph September 15, 2008 at 14:38 #

    I’d venture a guess that not even pro-cure autistics would think that death is better than autism, by a long shot.

    Also, what’s the stuff about working at Trump tower? TACA is all about going to Harvard. I can’t help but wonder if we’re dealing with an issue of expectations; expectations so unreasonable that most normal people don’t have a chance of fulfilling them.

  3. farmwifetwo September 15, 2008 at 14:46 #

    When parents are treated with respect and the attitude changes to accepting what services are necessary for one family, may not be necessary for another. And ABA/IBI therapists actually get fired for telling parents “If you don’t do what I tell you, your kid will be a failure”… Yeah.. right…

    I lost a winter after the ABA/IBI T’s left getting over the burnout, worrying the entire time they were right, yet being proven daily they were wrong. So I can easily see where someone could suffer from depression, PTSD, burn-out etc.

    Instead the attitude has to be “what do you need”. Your 5 yr old may need to be put in a group home due to behaviours that no-one can control. There is no shame in that. You may simply need 5 hrs a week so you can grocery shop, go to the hairdressers etc. That doesn’t make you a better parent than the one that put their child in a group home. Not all children will turn out to be like the adults in “Autism and the myth of the person alone”… not all parents should be expected to put their lives on hold to try to attain that level of education for their children.

    Families need supports tailored to fit their families. Not people demanding that this therapy be done, that vaccines are the cause, that it’s a fate worse than death…

    We need to be treated as individually and with respect no matter what our choices/needs are.

    Until that time, until we are supported properly so we live with Autism and not for it, there will be those, that cannot handle the stress of caring for a special needs child. There will be more Katie’s.

    S

  4. Kev September 15, 2008 at 15:09 #

    I’m not sure that we can really say that a lack of services is any justification for a belief (or action based on that belief) that its better to be dead than autistic. Of course better services are what everyone deserves but in their absence I cannot believe that its understandable when parents express such beliefs.

  5. Sad at Heidi's defeatist, anti-science, and dangerous anger September 15, 2008 at 15:12 #

    Just wow. Does she think of her kid like that? Or does she think that when she sees my kid? She seems to be a tried and true member of the ageofautism/evidence of harm psycho crew.

  6. HCN September 15, 2008 at 16:29 #

    A corollary to the fractured thinking by Heidi and friends that kids are better off dead than autistic is this statement: “Measles/mumps/pertussis/polio/meningitis is dangerous for a healthy child”.

    Pretty much telling us parents of kids with various health issues (like my son’s severe genetic heart condition) that it is okay for our kids to die, while their “healthy” kids will be fine.

    They claim they did not say that, but Ms. Rogers is promoting a special kind of eugenics that deems kids with autism, cerebral palsy, cystic fibrosis, Long-QT syndrome, hypertrophic cardiomyopathy and a even longer list of genetic conditions not deserving of life.

  7. HCN September 15, 2008 at 17:10 #

    Oh, crud… I wrote something without enough coffee… I forgot a very important “not”.

    What I have seen expressed by those who think vaccines are worse than the diseases is “Measles/mumps/pertussis/polio/meningitis is NOT dangerous for a healthy child.”

    Anyway, time to log off and go about my day.

  8. Ed September 15, 2008 at 17:18 #

    Yeah, it’s that “special” kind of eugenics that makes the poison smell sweet.

  9. Evonne September 15, 2008 at 17:45 #

    farmwifetwo:

    http://ballastexistenz.autistics.org/?p=248

  10. kristy augustiniak September 15, 2008 at 18:36 #

    I am so hurt that a parent would rather their child die then live being autistic.To even be able 2 let ur child go rather then helping them is crazy.MY middle child has autism and it is hard but i wouldnt trade him for anything.I love him just as much as my other two kids his name is jordan.He will b 5 this december and he is the reason i keep going.He has changed my life so much all i can do is thank him.With out him there would b no me.

  11. TalkinKamel September 15, 2008 at 18:52 #

    I won’t say Heidi Rogers would be better off dead (I don’t believe such a thing), but I do think she’d be better off if her brain actually functioned, instead of spewing off nonsense. . .

  12. Regan September 15, 2008 at 19:19 #

    it [autism] is a nightmare without end, it is post traumatic stress disorder every day,…Death may be better than autism in some cases….

    Gee, don’t hold back Heidi; tell us what you really think [sarcasm]

    And this is from the officer of a self-declared autism advocacy group? Who made her the arbiter of life and death?
    Do these folks play the “woe is me” card so hard among themselves that they lose all sense of shame and perspective?

  13. mayfly September 15, 2008 at 20:51 #

    Hmm, many, most? , all? of the neurodiversity community would fight against a cure for autism even if that cure saved lives. Think of the those who wander away from their homes or other safe havens and die before they are found.

    On one side you have the claim it is better to be dead than autistic. Implying autistics should be killed to show them mercy. On the other side. You have a group stating that autism is so good that even when it will lead to a person’s death, it is not to be cured.

    Seems the neurodiversity community and those favoring euthanasia have much more in common than either would like to admit.

    Yes, I know autism is incurable, but given the a hypothetical where a cure was available, not one ND supporter has stated any circumstance where they would favor it. (Some would allow those with the ability to choose to be cured, that freedom.)

    It is the person that is important. No one can convince me that the severe autistic longs for death, and no once can convince me the search for a cure is not a noble exercise, nor those who would thwart it are doing good.

  14. Patrick September 15, 2008 at 21:00 #

    Why in the hell does someone come in here saying people who are cure neutral will fight against a Cure, Mayfly, you misrepresent Neurodiversity again, you Jerk.

  15. Bunny September 15, 2008 at 21:13 #

    I saw an ad last night for a show airing in the US on October 1st called “Autism x 6.” It’s about a family with six kids, all on the spectrum. I read up on the family a bit, and found that they sell t-shirts that say “Autism bites!” (and I think that’s also the name of their blog). Hmmm. That’s offensive to me. I’m not saying autism can’t be difficult to handle, but to wear a shirt saying “Autism bites!” when you have a child (or six!) with autism? What must the kids think? Three of their kids have Asperger’s and one has PDD-NOS. The other two have “classic autism.” Surely these kids realize–based on mom and dad’s t-shirts–that their parents think the way they are “bites.”

    Imagine if someone, let alone the parent of any affected child, made t-shirts saying “Down’s Syndrome Bites!” or “Mental Retardation Bites!” Would that be OK?

  16. Kev September 15, 2008 at 21:16 #

    mayfly, I really don’t know how often we can keep saying the same thing to you before you start to hear it. Suffice it to say, you’re wrong. Badly wrong. Wrong enough to really owe people here an apology.

  17. Joseph September 15, 2008 at 21:52 #

    Yes, I know autism is incurable, but given the a hypothetical where a cure was available, not one ND supporter has stated any circumstance where they would favor it. (Some would allow those with the ability to choose to be cured, that freedom.)

    You’re wrong in your perceptions, mayfly, as Kev noted. I don’t think there are many people who are more anti-cure than I am, and yet, I can tell you of hypothetical circumstances where I would favor a cure.

    Let’s say all autism is found to be like PKU. That is, there’s metabolic deterioration leading to disability that is shown to be completely preventable through diet or drugs. I don’t think there’s a single neurodiversity proponent who would suggest that PKU should not be screened for, treated and prevented, the way it successfully is.

    You see, knowledge can change the way we perceive reality. At the moment, though, there’s no reason to think most autism will be found to be a condition like PKU at any time in the future, and many reasons to think otherwise.

  18. mayfly September 15, 2008 at 23:16 #

    Edit by Kev.

    I think we’ve heard enough from you on this subject mayfly. You cannot hear what people are saying to you hence it is pointless talking to you about it.

    Please, take a break from the site for a day or so.

  19. alyric September 15, 2008 at 23:25 #

    Mayfly wrote:

    “Hmm, many, most? , all? of the neurodiversity community would fight against a cure for autism even if that cure saved lives.”

    Rubbish again from the I have my ‘beliefs and I’m sticking with ’em’ Mayfly. Still harping on about something that’s indeed magical thinking.

    “You have a group stating that autism is so good that even when it will lead to a person’s death, it is not to be cured.”

    More lies. You’d have a hard time findimng anyone here supporting that nonsense, well maybe because it is arrant nonsense. Where did you learn such poor thinking skills?

    ” (Some would allow those with the ability to choose to be cured, that freedom.)”

    Wrong again, but then when the idee fixe xan’t be shifted, why expect something reasonable. Not too long ago, this very question was asked in a quiz on this blog. The overwhelming response was that if the child or adult so desired a cure that happened along then the duty of the parent was to make the arrangements.

    “and no once can convince me the search for a cure is not a noble exercise, nor those who would thwart it are doing good.”

    Just out of curiosity, how does one thwart what does not exist? Some of us prefer to live in the real world.

  20. Ms. Clark September 15, 2008 at 23:33 #

    Mayfly, Even dear Lenny Schafer and his lieutenant, Heather, were at the IACC “Town Hall” meeting where I addressed Dr. Randi Hagerman, expert on Fragile X, and recollected to her that I had directed my friend toward enrolling in Hagerman’s Frag X treatment research. It’s this older antianxiety drug called fenobam that they are trying out on Frag X adults with the thought that it might address some of the issues of neuronal connections in the brain, and impact Frag X mental retardation and probably some aspects of autism, though time will tell if the stuff does anything, at least there are some sound scientific principals specific to Frag X and a reason to think that the drug might impact the brain (hopefully in a positive way).

    My friend who I think might benefit from this experimental therapy (or maybe another one because of the neurological problem FXTAS) would never have known about it (guaranteed) if I hadn’t known about it first. We are waiting for the results of the Frag X testing on my friend before xe can have the details of the experiment explained to xem. Dr. Hagerman urged me to get my friend tested for Frag X based on the information I had about my friend..

    In this case I was the gatekeeper the one who passed on the information about Frag X testing and the one who contacted the famous researcher about my friend.

    Am I actively fighting against this “cure”?

    Explain it to me. How is it that I am fighting against this treatment (which is about the only hypothesis I know of that addresses autism/MR brain function in a very concrete and scientifically supported way).

    Mayfly, you feel free to come here and throw around insulting generalizations. Maybe now you can follow that up with an apology.

    If they found out that my kid had the same kind of neurological issues that Frag X kids have and that fenobam would help in some way (I can’t imagine what it would be) and not do any harm, I would consider it for my child. But I can’t see it as a cure for autism. It’s developmentally implausible or impossible to take an autistic adult and rewire their brain to make it into a typical adult’s.

    I would not pursue that for my child. I would not pursue it for me. But neither would I break into your home brandishing a big club and demand that you hand over that magic bottle of pills that you intend to cure your daughter with, nor would I try to stop you from taking your daughter to the doctor to get the prescription or burn down a pill-factory to stop you from getting your magic cure.

    I don’t know of any “neurodiverse” who would try to stop any “pro-cure” parent from pursuing a cure, unless the “cure” was likely to do harm to the child. Like, if a parent told me that they were going to try to (insert action toward a child that is likely to kill the child immediately) because they heard it was a cure for something (and the parent had lost touch with reality or was incredibly stupid)… I’d do whatever I could to stop that “treatment” from being carried out. I hope you would do the same.

    In other words, no one is trying to stop you from curing your daughter, Mayfly. I think you imagine that your problem with not being able to cure her stem from some bad people stopping that from happening. That’s not realistic, but it’s a common thinking pattern among the more desperate cure-oriented parents. “I know why my kid is still disabled! It’s the evil neurodiverse that are to blame!”

  21. Ms. Clark September 15, 2008 at 23:36 #

    Sorry, I shouldn’t have responded to Mayfly. When I wrote my response, I hadn’t seen Kev’s request for Mayfly to take a break.

  22. qchan63 September 16, 2008 at 00:08 #

    I wonder what Heidi’s criteria are for deciding which children are better off dead. Can she tell just by looking? Does her opinion take into account the child’s own, subjective quality of life? Or is it based solely on behavior that offends her? Maybe there’s some Doctors Data test that comes back with a thumbs-up, thumbs-down?

    Would she look at my child and see a lost cause, a mistake, something to be disposed of? Would she look at your child that way? Her own?

    Again and again, people like Heidi talk so self-righteously, so fatuously of their crusade to help the children. And again and again, she and Olmsted and Handley and Dachel and all the rest define autistic people in terms of damage and poison and defect.

    That language, more than all the blather about saving kids, betrays the true face of their movement. And it isn’t pretty.

  23. mayfly September 16, 2008 at 03:46 #

    I doubt this be posted. I had tried painting scenarios where autism led to an immediate death by suicide. If a person responded, “I In that case, by all means cure the autism!”, I don’t remember seeing it. I thought I saw, something to the effect that other people commit suicide as well. The logic being that we should not prevent any deaths if we cannot prevent them all?

    I decided to try a new tact. If I had asked should we help people who may wander before tragedy strikes, I seriously doubt anyone would have even addressed the question. to do so means admitting autism, in this case, is not only detrimental, but deadly. I turned it into an accusation that the ND community would not move to save that life.

    I am pleased many were offended. Not that I gave offense, but that many believe there comes a point where the person’s life is more important than their autism.

    Now, why do I think many people in the community are cure against a cure? The attacks on Autism Speaks including attempts to interrupt fund raising efforts. The categorizing of parents who want a cure as completely selfish. The attempts to get autistics who do not want a cure on to boards to steer those organizations away from seeking a cure.

    No, I don’t think there is anybody stopping research into cure development, and I don’t think anyone is trying to stop me from curing my daughter, whose not on any alternative therapies. I am not desperate to cure her. She’s to precious to put at risk, but I do long for one, not just for her, but for those like her. Even if the breakthrough needed to be administered at a much earlier age was useless to her.

    I’ve come to the following conclusion: Since neurodiversity has no statement of its beliefs, and therefore no statement can be said to be representative. Therefore questioning those beliefs is futile.

  24. Lizze September 16, 2008 at 04:33 #

    I am the mother of a beautiul 8 yr old Autistic son. I love him dearly and cannot fathom how anyone would believe that death is better than Autism. Although I do agree that “it is a nightmare without end, it is post traumatic stress disorder every day…”. I truly cannot help but wonder, who is the death better for? My son has no idea that he has Autism. We’ve told him. We’ve explained it to him, however, he simply knows he is who is he. So how could death be better for him? How truly selfish and self-centered for a parent to pressume death is better for our children than a life as themselves.

  25. HCN September 16, 2008 at 04:39 #

    mayfly, the point Ms. Roger was making that it would be better for a child to die from measles, pertussis, rotavirus or other vaccine preventable disease than have autism.

    Of course, the problem with that thinking is:

    1) There is no real scientific proof that vaccines cause autism (if you have some, please present it, but remember I am really looking for actual science — not anecdotes, not discussion forums, not news stories or essays on random websites or books).

    2) That many of these diseases actually cause severe neurological disabilities. The meningitis and encephalitis that can occur with haemophilus influenza, measles, mumps and others, causing severe mental disability along with blindness, paralysis and deafness. This can also happen with lack of oxygen to the brain from pertussis, diphtheria, haemophilus influenza, tetanus and others. See:
    http://www.timesonline.co.uk/tol/news/uk/article1055533.ece

    3) That it is a false assumption that “healthy” children fare well with these diseases. I dare not post another URL (yeah, Kev says two are allowed, but I have seen more than one go into moderation!)… but you can easily look up what happened to Roald Dahl’s oldest daughter (dead within 24 hours of first symptoms), Henry David Thoreau’s brother (I just read the book “American Bloomsbury”), and how diphtheria reduced the number of children in the family made famous by the book and movie “Cheaper by the Dozen” (book “Making Time: Lillian Moller Gilbreth”).

    4) That many of us do dearly love our disabled children and do not wish to see harm come to them. We do not consider their lives to be disposable.

  26. Ms. Clark September 16, 2008 at 09:26 #

    Mayfly, The problem comes from trying to say that you know what folks who subscribe to the idea of “neurodiversity” believe. No one has the right to come up with **the** definition of the word. I have my own. I suspect that I could be the only person with that definition… though I haven’t tried to put out a world-wide poll on the question.

    You ought to be prepared for more and more autistic adults getting a proper diagnosis in the next few years. It’s a coming tidal wave of newly diagnosed (accurately diagnosed) ASD adults… the hidden horde!) I can’t say that they’d all be against a cure, but I think probably the majority would be (like at least 51% of them maybe more like 99% of them).

    If they can get in places of influence and make a persuasive argument the way that gramma and grampa Wright have in bluntly stating they’d prefer it if people like me were never born, ever, period, but they’ll settle for a world without any people like me in it before they die…. I’m guessing Gramma Wright doesn’t actually want me and my kid and your kid to die ahead of her, but that’s what she’s saying literally. I don’t think anyone in the **real** world is contemplating making a pill that can transform an adult from being on the autism spectrum to being entirely not. So we have to imagine that gramma might like us all to off ourselves or move to another planet or ????

    At any rate, the way it is the people who think it’s a bad idea to try to wipe out autism are a poor and poorly organized minority. They have a perfect right to express their opinions, and that is what they are doing. If they can make a persuasive argument with the powers that be that autistics (including those who escape/elope/bolt) are a worthy addition to their communities, and so since we want them to stay alive we can figure out ways to keep them safe at the same time as working to keep normal babies safe.

    In my family it was my typically developing kid who bolted from my proximity at age 2 and ran headlong into a river, into water over xyr head. At which point the kid was doomed to drown for absolute sure because I had no idea that the kid had bolted. I thought the kid was standing near the car we had just parked and were getting our things out of… thankfully a woman was already there in the river, swimming when the kid came charging in water over xyr head…

    It’s shocking to think how close I came to losing a child. My ASD kid would never have done anything of the sort.

    The answer is not always, “cure the kid.” Sometimes the answer is “fix the situation.” It’s more logical and doesn’t make the kid seem like a freak that is unwanted in his/her current state. But some people can’t let go of this “cure the kid” mentality and can’t at all get into the “cure the situation that is causing problems” mentality. And then you get these parents who are so caught up in the horror of it all that they will express the abject horror of having a mainly quirky kid who wouldn’t even be considered unusual in some families, but it just a nightmare to that family. I’m thinking of Lujene Clark whose son descended into the hell that is Asperger syndrome at around age 9 following a flu shot… uhuh.

  27. Kev September 16, 2008 at 09:32 #

    I’ve come to the following conclusion: Since neurodiversity has no statement of its beliefs, and therefore no statement can be said to be representative. Therefore questioning those beliefs is futile.

    Finally, you seem to be making a start towards comprehension.

  28. Kev September 16, 2008 at 09:39 #

    Although I do agree that “it is a nightmare without end, it is post traumatic stress disorder every day…”

    Is it? I am always puzzled by that sort of statement. I laugh a lot with my autistic child. We do good things together. Its certainly not a nightmare without end.

  29. mayfly September 16, 2008 at 13:25 #

    I think far too much was read into wiping out autism statement. Certainly it didn’t mean hunting down adult autistics, no did it mean aborting children so that no autistics were born. It was about finding a cure and the belief that given the choice between having a child with autism and one without, all other things being equal, parents would choose to cure the autism. The result would be a dwindling of the numbers of autistics until the condition was all but extinct.

    I find the posts explaining what the Safe Minds official had said about it being better to be dead than autistic as wrong. I thought I had strongly condemned that viewpoint.

    “Fixing the situation.” may be the best thing we can do currently. It does not mean it will be forever so. When I read of a parent saying, “Johnny, my first grader, is reading at the fifth grade level, solving two-variable equations, and has mastered the ‘Transcendental Etudes’, but has no friends.” I often think, the person had no right to complain. The truth us that person’s suffering is real. It is based on a concern for their child’s well-being.

    Lizzie, Some times the same behaviors which barely register with me, can drive me up the wall. Most often it is because I want to do something which her behaviors are making impossible. I’d like to say that something is always vitally important, but it is often something as trivial as watching a show on TV. I curse my selfishness and her behaviors do not seem as nightmarish. Indeed often they stop.

    Not all her behaviors can be traced to my attitude, and sometimes they can be so incessant that my wife and I are frazzled no matter how pure are hearts. However there are times when there is a connection between my attitude and her behavior. When I let go of my selfishness, she calms down. I guess this applies to about 20% of her outbreaks, but If a shift in my attitude stops those it is a great thing. Also there are no bad side-effects. The bond which took so long to form between us is strengthened and she knows she is loved.

    The above is true for me. I see myself as a loving, but woefully imperfect parent. It may not apply to you. What are you doing to address your child’s behaviors? What are you doing to refresh yourself in order to better handle them.

  30. Ruth September 16, 2008 at 13:27 #

    My mother once said I was very difficult for the first 6 years of life, then I was an easy kid to deal with. My daughter was about the same. Now she is starting the teen stuff, so all bet are off!

    I recently finished a fiction work, “The Speed of Dark” set in a future where autism is treated at birth. The novel focuses on the remaining cohort who grew up before the early intervention. A new, risky treatment of adults is offered in a clinical trial and several autistics discuss if they wish to risk injury or death to become ‘normal’. Not a perfect novel, but it does raise some interesting discussion.

  31. Lizze September 16, 2008 at 14:34 #

    Mayfly,

    I too am a loving and imperfect parent. My husband and I have literally tried everything within our power to assist our son. Unfortunately, Autism is not his only problem. He also has Bi-polar, PTSD, ADHD and OCD so an already difficult situation is just that much more complicated. He’s currently in OT and speech every week. As well as, weekly appointments with his psychologist and monthly appointments with a psychiatrist. He also has a developmental neurologist whom we see every 3 months or so. All of his doctors have told us that he is a very unique case, which makes him difficult to treat and to parent. He attends a charter school for Autistic children and we are working to line up some respite care for him (as well as ourselves). As for us, there really isn’t anything that we can do for ourselves at the moment – beyond trying to watch that ellusive television show or taking a hot bath. Our families try and help us, however, they are ill-equiped for the job so that is a rare occurance. We get a small break while he is in school, which usually gets spent on the everyday things that need to be done to keep the household up and running. I can’t tell you the last time we went out by ourselves for a date.

    Please understand that when I say I agree that “Although I do agree that “it is a nightmare without end, it is post traumatic stress disorder every day…” it’s not from a place of anything other than love for my son. As I stated, he is a unique case and as such it is very difficult to get a read on him most of the time. For example, most Autistic children thrive on strict schedules. This is not the case for my son. He does well with general schedules and routine. (ie the same things in the same order but not necessarily the same time) But he is over-whelmed by the strict schedules and routines. It is a daily struggle to find and maintain the balance that he needs while accomplishing anything else in life.

  32. Kev September 16, 2008 at 15:55 #

    That’s interesting Lizzie – I’m manic depressive myself so I can empathise with how difficult things must get for you and your son. How old is he if you don’t mind me asking?

  33. Joseph September 16, 2008 at 16:22 #

    Now, why do I think many people in the community are cure against a cure? The attacks on Autism Speaks including attempts to interrupt fund raising efforts. The categorizing of parents who want a cure as completely selfish. The attempts to get autistics who do not want a cure on to boards to steer those organizations away from seeking a cure.

    I haven’t seen evidence of this. What I have seen is evidence that people don’t like the way Autism Speaks portrays autistics in order to raise funds. This is a completely legitimate complaint. I have seen evidence that people don’t like the focus on genetic prevention. Again, completely legitimate.

    Now, of course some of us see research priorities in a different way. For example, I think research on successful adult outcomes and learning styles should be given higher priority than biomedical research. I can cite pragmatic reasons for this.

  34. Mike McCarron September 16, 2008 at 17:21 #

    “Death may be better than autism in some cases”; I will never understand this rhetoric.

    Generally theses comments are made by someone who has never had to arrange for a child’s funeral; hopefully that is the case here. If they had ever lost a child words such as those would never cross their lips. The next thing that crosses my mind is that the statement is being made by some autism “advocate”. It seems that many of the “advocates” are a larger burden to carry than the disability. They are a never ending nightmare.

    Are these words warning signals? Should they be taken seriously? I certainly don’t know. I will say that this attitude displays a lack of respect for life, and I hope the person saying these things comes to her senses very soon.

    I can only repeat something said by my son; “I ask all parents and especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies”. He clearly viewed Katie as someone to be cherished.

  35. Kev September 16, 2008 at 17:32 #

    Bravo Mike. Exactly.

  36. qchan63 September 16, 2008 at 19:28 #

    I had forgotten that Heidi also was at the center of this tawdry little incident last year:

    http://autismdiva.blogspot.com/2007/01/creative-backpeddling.html

    I guess her latest, pathetic statement at least makes that petty bit of duplicity seem minor in comparison.

  37. mayfly September 16, 2008 at 22:00 #

    Lizzie, the only autistic symptom my daughter lacks, besides the verbally based one as she does not talk, is the compulsion to line things up which I have often considered a benefit.

    We were lucky that we stumbled onto a church that has programs for special needs children of all abilities. This gave us time to spend together, and also made us reflect on what’s important in life. It also helped my wife lose the feeling that she was being punished by God for her past wrongs. Our daughter used to attack both of us with tooth and claw. She bit very hard, but usually I could move fast enough to avoid it. She scratched until every night blood streamed from my arms. I say I because I could withstand the attacks, but my wife could not. This separation between my daughter and my wife were extremely hard on my wife. I am not exaggerating here at all. Yet while I held her, sometime at arms-length, and sang to her she calmed down. A bond began to build between us, but my wife felt out of the picture. My wife lovingly bathed, clothed, fed and did everything else for our daughter, but for a longer time the bond between them was nearly non-existent. But it was building just the same. Now they do so much together. Right now they are using an online ABA program together. All this I attribute to our daughter’s maturing and God.

    This Saturday another season of E-Soccer starts in Pleasanton, CA. I’m hoping K, our daughter will be more participatory. Up until now all she has shown no interest. However, it gives is a chance to talk to other parents, and on occasion see a bond form between a child and a coach, and very broad smiles of his parents and they see the rare sight of their son enjoying himself. This is another way we get rest.

    We have a wonderful organization, VIA, in the San Francisco Bay area, which runs camps for special needs kids. I and many other parents, mostly those of children who are confined to wheel chairs, sleep in our cars to get the one-on-one spots. Their kids are in wheel chairs have CP. They attend different sessions than my daughter. I admire the parents of these kids greatly. The camps give us a couple of weekends, and a short week of respite. This year we are going to try for a longer camp.

    You and your spouse need to go out to lunch soon. My wife and I went to the coast last week, while K was i school. It refreshed us no end. We promise ourselves to do it at least monthly.

    Make sure you make time for your spouse. One of he best thing you can do for your son is to build a loving home.

  38. pumma September 17, 2008 at 03:54 #

    “I think research on successful adult outcomes and learning styles should be given higher priority than biomedical research. I can cite pragmatic reasons for this.” Joseph, you haven’t proven any pragmatic reasons. Of what help will research be on learning styles, if those who are the subject of the research have brains that are damaged or poorly formed and likely can’t learn in their impaired condition? If biomedical, genetic, and other deep research isn’t pursued, how are researchers going to come up with ways to remedy underlying biomedical/neurological problems, to remove the impairments that have precluded learning and decent adult outcomes? This is no time for mild research when so many things are coming into knowledge and possibility these days with research. I’ve waited around long enough for some mental health professional to address my mental/learning impairments with some vigor. It’s time to move forward for the future.

    The people on your side must stop acting like they haven’t said what they have said and implied in so many words. Who should be persuaded by what you preach if you all talk about it so abstractly, and then deny what you likely meant when the people you’re trying to convince come to a conclusion about what you stand for based on what you have said? I know about the vicious attitudes directed towards your opponents by many on your side.

  39. Kev September 17, 2008 at 06:28 #

    The people on your side must stop acting like they haven’t said what they have said and implied in so many words.

    Example? Please don’t talk so abstractly.

  40. pumma September 17, 2008 at 08:08 #

    “Example? Please don’t talk so abstractly.”

    Like how your side claims that they don’t oppose treatment, when just about every form of treatment has been belittled by at least somebody in your movement. How about how they really oppose not only a cure that they claim would change the person innately to an NT, but also apparently oppose cures to only remove impairments, which is shown by their adherence to that travesty called the “social model of disability”. With claims that disability is due only to lack of societal “accommodations”, who can believe they respect the concept of eliminating disabilities? So when it comes to most on your side, their “anti-cure” views aren’t only intended to preserve uniqueness.

    Some of them have implied that significant impairment doesn’t matter and isn’t bad, by saying that ability doesn’t determine happiness. Parents who push for cure have been accused of hating their children and wanting another child, as the accusers claim cure would remove autism and thereby remove the person. Parents have been seemingly accused of being selfish, being described as only being interested in status and their own comfort, in wanting their children recovered.

    Autism Speaks has been accused of attempting eugenics through genetic research that has been said would lead to prenatal testing/selective abortion. (Not that I like that organization.) Autistics who are pro-cure have been characterized as having internalized hatred against them, and as being obsequious to NT people.

    I have seen this behavior, and now I see your side pretending they had nothing to do with it in a condescending and arrogant way, as few people will absolve them for a lot of it.

  41. Kev September 17, 2008 at 08:50 #

    Like how your side claims that they don’t oppose treatment, when just about every form of treatment has been belittled by at least somebody in your movement.

    Are you therefore claiming there is a universal code of conduct or set of rules for ‘my side’? Could you link to it please?

    How about how they really oppose not only a cure that they claim would change the person innately to an NT, but also apparently oppose cures to only remove impairments

    Rubbish. I’ll say here and now, as I’ve said many times before: I don’t oppose the removal/amelioration of impairments. Could you link through to the people that do?

    which is shown by their adherence to that travesty called the “social model of disability”. With claims that disability is due only to lack of societal “accommodations”,

    Again, can you link through to the claim that ‘my side’ claim that the social model of disability acts in complete isolation and is the _only_ model?

    who can believe they respect the concept of eliminating disabilities? So when it comes to most on your side, their “anti-cure” views aren’t only intended to preserve uniqueness.

    Well, you _say_ that – can you back it up?

    Some of them have implied that significant impairment doesn’t matter and isn’t bad, by saying that ability doesn’t determine happiness.

    Ability doesn’t determine happiness. I know lots of people, including myself and my child, who are classed as disabled (my child is classed as very significantly disabled) and are happy quite a lot of the time.

    Parents who push for cure have been accused of hating their children and wanting another child, as the accusers claim cure would remove autism and thereby remove the person.

    I’m not sure these parents hate their children but take a look at the thread you’re in. This mother thinks its better to be dead than autistic. Do you think thats a healthy opinion to hold? Take a look at the words of Mike McCarron commenting above you whos granddaughter was murdered by her mother.

    Parents have been seemingly accused of being selfish, being described as only being interested in status and their own comfort, in wanting their children recovered.

    Oh, I definitely think that’s true in some instances. I hear lots and lots from some parents about how inconvenient the whole thing is. Boo-hoo. Get on with it.

    Autism Speaks has been accused of attempting eugenics through genetic research that has been said would lead to prenatal testing/selective abortion. (Not that I like that organization.)

    Yes, I think that might be true. I don’t think its a purposeful campaign of eugenics but I do think they would prefer no more autistic people to be born. Its also an opinion thats held by people an the extreme opposite end of the ‘nd’ belief system.

    Autistics who are pro-cure have been characterized as having internalized hatred against them, and as being obsequious to NT people.

    I don’t think that. Some might.

    I have seen this behavior, and now I see your side pretending they had nothing to do with it in a condescending and arrogant way, as few people will absolve them for a lot of it.

    You make a lot of assumptions, generalisations and false claims. There is no single organisation that represents ‘my side’. The single core property of people who think in the same rough terms as me is that of respect. Respect for the condition of being neurologically different. Beyond that – we’re all different I think.

  42. pumma September 17, 2008 at 10:12 #

    “Are you therefore claiming there is a universal code of conduct or set of rules for ‘my side’?” Not really. There seems to be a consensus and a single goal. But not every way of expressing that goal is the same with all of the propaganda.

    “I don’t oppose the removal/amelioration of impairments. Could you link through to the people that do?” Well I don’t know if I should name names. But I am willing to. It’s not always easy to tell if they are completely against impairment removal, as the way they talk doesn’t make it clear, but has so many signs they are against it. If they really weren’t against impairment removal, I think they would have made an effort to make that clear by now.

    “can you link through to the claim that ‘my side’ claim that the social model of disability acts in complete isolation and is the only model” They repudiate the medical model, and don’t mention any other way of considering disability. With the lack of common sense in their ideas, virtually no ideas are presented along side the social model to make things sound sensible.

    “Ability doesn’t determine happiness. I know lots of people, including myself and my child, who are classed as disabled (my child is classed as very significantly disabled) and are happy quite a lot of the time.” I believe that it is obvious from what I observe that in general, it does determine happiness. I think that trend becomes stronger when someone reaches adulthood. I see that esteem is based many times on intellectual ability as the most cherished quality, and people trying to outpace each other in acquiring ability and the fruits of it. I hear of people being disappointed and miserable about not having enough ability, while others have so much of it. I for one hate having to live being mentally disabled. I wish all the time that I could do what others could do.

    “I’m not sure these parents hate their children but take a look at the thread you’re in. This mother thinks its better to be dead than autistic. Do you think thats a healthy opinion to hold?” I don’t approve of those comments, but I think such comments are seldom made by parents.

    I don’t know how I couldn’t make assumptions and generalizations in describing what you all stand for, when so much of it is expressed through propaganda with implicit innuendos. If I think it is being expressed in order to manipulate people into agreeing to some agenda, I’ll just come up with an idea of what the intentions are behind the things being expressed, based on a judgment of what it seems like. Even if I can’t say what your side is about with complete certainty, I don’t think people should wait until someone decides to state it explicitly before judging it, because there are too many things at stake with all that is going on, to not be defensive against an agenda which seems to be being pushed for.

  43. Joseph September 17, 2008 at 16:26 #

    Joseph, you haven’t proven any pragmatic reasons. Of what help will research be on learning styles, if those who are the subject of the research have brains that are damaged or poorly formed and likely can’t learn in their impaired condition?

    If those who are the subject of research are as you say, what good will it do to study metabolic anomalies and such? You can’t fix brain malformations with diet, drugs and so forth. You seem to be implicitly arguing the same thing I did – research money would be better put elsewhere.

    Of course, I don’t think that all autistics are brain damaged. But generally speaking, the autistic brain is a different type of brain, which again, cannot realistically be made normal by diet or drugs.

  44. Joseph September 17, 2008 at 16:32 #

    Like how your side claims that they don’t oppose treatment, when just about every form of treatment has been belittled by at least somebody in your movement.

    That’s because they haven’t been shown to work, and they haven’t been shown to be safe. Those treatments should absolutely be scrutinized. It’s the right thing to do. The wrong thing to do is to accept them at face value, and experiment with children simply because people think that the consequences can’t be any worse than autism.

    Name one treatment shown to work and be completely safe by at least 2 randomized trials, and that neurodiversity proponents still oppose.

  45. passionlessDrone September 17, 2008 at 17:21 #

    Hi Joseph –

    If those who are the subject of research are as you say, what good will it do to study metabolic anomalies and such? You can’t fix brain malformations with diet, drugs and so forth. You seem to be implicitly arguing the same thing I did – research money would be better put elsewhere.

    Of course, I don’t think that all autistics are brain damaged. But generally speaking, the autistic brain is a different type of brain, which again, cannot realistically be made normal by diet or drugs.

    But there are ways to address some of the results of differening brain structures with drugs or other chemicals. I am of the opinion that the whole ‘differently wired, and thus untreatable’ mindset to be a gross over simplifictation. Likewise, the notion that to be of any use, a treatment must turn an autistic brain into a normal one is much too narrow. There are many potential areas to be addressed, and even though ‘fixing’ one might not make a brain ‘normal’, that doesn’t mean it isn’t a good idea.

    There are plenty of pilot and ongoing studies using targeted chemicals to address the brain; including taking into consideration the different brain structure.

    By way of example, we have observations of differences the numbers and types of receptors, i.e., nicotinic, cholinergic, muscarinic in the brains of people with autism. My wife is more up to speed on this area than myself, but, for example, if we know that there are fewer muscarinic receptors, or a particular muscarinic receptor type expresses at a reduced level, one possiblity is to introduce chemicals that inhibit the re-uptake of the triggering neurotransmitters, or supplement mimic chemicals. We haven’t added any muscaranic receptors, but we can make the existing receptors more efficient, because they are triggered more frequently either by analogs, or inhibition of neurotransmitter removal.

    We aren’t there yet, but knowledge in this area is expanding rapidly. Knowing more won’t reduce the need for education, to be sure, but to paint the issue as closed is wrong, wrong, wrong.

    – pD

  46. pumma September 18, 2008 at 01:02 #

    “what good will it do to study metabolic anomalies and such? You can’t fix brain malformations with diet, drugs and so forth” The inability to repair hasn’t been proven. Studying metabolic anomalities shouldn’t be abandoned when such anomalities exist and can have a role in etiology.

    “That’s because they haven’t been shown to work, and they haven’t been shown to be safe. Those treatments should absolutely be scrutinized”
    ABA has been rigorously shown to work but has been slandered incessantly.

  47. Joseph September 18, 2008 at 15:24 #

    ABA has been rigorously shown to work but has been slandered incessantly.

    I know that’s what they say, but in fact there’s only one randomized trial of ABA, which was largely a failure. Why do the effects of ABA appear to go away as study methodology is improved?

    What sorts of side-effects have been studied as potentially being produced by ABA? Why no adult outcome studies?

  48. pumma September 18, 2008 at 16:53 #

    I bet there is a lot of motivation to disprove ABA to make it easier for the government and insurance companies to not pay for it. Of course there is only so much ABA can do, but if there are some gains made which have been proven, I doubt they wouldn’t be carried into adulthood. There’s no way a therapy could have gone this far with its approval and coverage and not be effective at all.

    What possible side effects could there be from a behavioral therapy? It’s pathetic that parents have to fight to gain just this for their children. The “skeptics” will belittle and captiously question every therapy, and if they’re successful, it will become likely that children will have no therapy available for them, leaving them abandoned and many of them with no hope.

    Then the children would only have dangerous medications shoved into them to subdue them, almost regardless of the side effects. If you guys want to bash every therapy, come up with an effective alternative for treatment, and if you won’t, who should believe you even want an effective treatment to exist?

  49. Joseph September 18, 2008 at 17:45 #

    There’s no way a therapy could have gone this far with its approval and coverage and not be effective at all.

    It’s amazing, but unless you can find that successful randomized trial and the adult outcome study, it seems to me that’s exactly what happened. It’s as if quackery won that time.

    If you guys want to bash every therapy, come up with an effective alternative for treatment, and if you won’t, who should believe you even want an effective treatment to exist?

    Ridiculous. So if I’m against, say, human-caused global warming, I should right now be working on alternative sources of energy?

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  1. What It’s Like: Life with Charlie and a Poem (and the VICP) - September 16, 2008

    […] seen and smelled our share of plenty. Nonetheless never would or have we thought that h would be better to be dead rather to be autistic. This very notion was the subject of a post yesterday on Left Brain/Right Brain and such a […]

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