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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64 Responses to “Better dead than autistic”

  1. alyric September 18, 2008 at 19:34 #

    Pumma wrote:

    “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.”

    Careful with the conspiracy theories there. The people pushing ABA and exaggerating the benefits are the ones supplying the service. I’m not necessarily in favour of ABA bashing per se, mostly because what passes for ABA theses days, thankfully isn’t. However, with all the kid centred stuff they are in fact doing, there is still no scientific basis for any of it. I kid you not. It’s all a loose empiricism, which more or less says this ought to work. So, what I worry about are two things – getting therapies that are based on the autistic learning style of the actual child. That to me must be the optimum and at present it does not exist, mostly for historical reasons to do with the ideas behind ABA. The second is that behavioral therapies are not for everyone, because they aren’t sophisiticated enough for the vast majority of the spectrum who have no cognitive disabilities. An Australian researcher has done something on cognitive behavioral therapy and that makes a lot more sense. However ,since we’re all stuck with behavioral programs the only realistic way forward is to get the programs themselves to change.

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

    Yes it can and yes it did.

    What possible side effects could there be from a behavioral therapy?

    Try this for size. Your child has the usual autistic strength in pattern recognition, but since the therapy insists that learning tasks must be broken down into discrete manageable sizes and makes no distinction between motor tasks or learning tasks, the child is deprived of any ability to use their strenths for learning. The fact that the child will be judged slow will be attributed to the autism. Now, do this intensively from the age of 2 and what have you done?

    There’s also Deci and Ryan, whose work indicates that rewards undermine learning, period.

  2. Dedj September 18, 2008 at 20:50 #

    I always find these conversations amusing. People never fail to sling the accusation that ND proponents want to sit around and do nothing at us.

    This amuses me no end as I know of several prominent people within the field of autism therapies who are either autistic and pro-ND or are pro-ND and have had a major hand in developing or promoting those areas.

    Hell, just at autscape ’08, I met 6 such people, and came away with knowledge of many others.

  3. pumma September 19, 2008 at 11:43 #

    The United States Surgeon General (1999) concluded, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior.”

    Joseph, I doubt the complete lack of necessary studies for ABA exists.
    “Ridiculous. So if I’m against, say, human-caused global warming, I should right now be working on alternative sources of energy?” Well yeah, that’s what the people who believe in global warming are advocating for if they’re not working on it themselves. When important things are at stake, I would expect those who care to condone action in such circumstances.

    I refuse to be careful with conspiracy theories that are so obviously possible. Parents are also pushing ABA but you wouldn’t listen to them. If ABA isn’t being carried out properly, someone should be taking care of that problem instead of lying about ABA, undermining the coverage of it which could the lessen attention towards gaining quality service.

    What is the autistic learning style? Is there even a distinct one? Where is your scientific basis for that? “vast majority of the spectrum who have no cognitive disabilities.” Lie. If that cognitive behavioral therapy thing you mentioned has promise, someone should look into it then instead of scapegoating ABA.

    “child has the usual autistic strength in pattern recognition, but since the therapy insists that learning tasks must be broken down into discrete manageable sizes and makes no distinction between motor tasks or learning tasks, the child is deprived of any ability to use their strenths for learning” Where is the evidence of that stength of pattern recognition, and what proportion of those with autism have it? And how would breaking down tasks strip them of their ability to use such strengths for learning. If they have such strengths for learning, why weren’t such strengths gaining skills for them without any therapy? And ABA doesn’t have to be the only therapy used.

    “The fact that the child will be judged slow will be attributed to the autism.” I can’t help but thinking that you’re trying to convince people that there are no learning impairments in autism.

    “always find these conversations amusing. People never fail to sling the accusation that ND proponents want to sit around and do nothing at us.” Dedj, there is no other reasonable conclusion based on what ND says. You guys need to be responsible for the things you say and stop trying to sneak out of them when you’re called out on it. And what do you mean by “us”. I wonder how you could be a stakeholder when you likely have a high level of ability without therapy. ND approves of practically no therapy, and condemns the idea that impairments are misfortunes, and denies the reality that impairments aren’t due to society! Who could trust them? Name one therapy an ND person has devised.

  4. Joseph September 19, 2008 at 14:02 #

    The United States Surgeon General (1999) concluded, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior.”

    Joseph, I doubt the complete lack of necessary studies for ABA exists.

    Again, I’m completely aware of what authorities think of ABA. I frankly don’t care if the Pope thinks ABA is great. The fact remains, as methodology is improved, the effects of ABA go away. Granted, there’s only one randomized study, but so far the pattern doesn’t look promising. It’s no different to what you see with Homeopathy or Acupuncture.

    The randomized trial, Smith et. al. (2000) with errata (Smith, 2001), came after the Surgeon General’s recommendation.

    That should be taken as a sort of lesson. If anyone thinks that quackery can’t become mainstream, think again.

    I wrote about this here.

  5. pumma September 19, 2008 at 15:09 #

    In Smith et. al. (2000): “The groups appeared similar at intake on all measures; however, at follow-up the intensive treatment group outperformed the parent training group on measures of intelligence, visual-spatial skills, language, and academics, though not adaptive functioning or behavior problems. Children with pervasive developmental disorder NOS may have gained more than those with autism.”

    What are you claiming they lied about? How can you disprove all of this? Even if ABA isn’t helpful for everyone with autism, what if it is more helpful for those with PDD-NOS? It wouldn’t deserve complete bashing if there are some who can benefit from it. And I don’t trust any criticisms coming from Michelle Dawson and Morton Ann Gernsbacher. I think no matter what evidence is presented of something you don’t like, you will keep coming up with some criticism to discredit it, or just hold them to a higher standard, and if they meet that standard, just demand an even higher standard.

  6. Joseph September 19, 2008 at 16:20 #

    pumma: Smith et al. (2000) had errata: Smith (2001). Basically, there was no statistically significant difference in outcome in two language scales, contrary to what was originally reported. In general, the results were marginal, and not comparable at all to non-randomized trials that had previously generated a lot of hype. That’s the point. It’s a red flag if by improving methodology the effects fade.

    You have to consider that Smith is a colleague of Lovaas. The study was carried out specifically to counter prior methodological criticism.

    There’s a publicly available paper by Dr. Gernsbacher that gives more details on this an other matters related to ABA.

    Dr. Gernsbacher is correct that Smith et al. (2000) should be applauded for using, you know, scientific rigor to study ABA. In the future it would be good to have even more rigor, such as blinded assessments, for example.

  7. Michelle Dawson September 19, 2008 at 18:03 #

    “And I don’t trust any criticisms coming from Michelle Dawson and Morton Ann Gernsbacher.”

    If anyone can find factual errors in any of my formal or informal work, please point them out. I always appreciate genuine criticism.

    It’s not difficult to verify what Dr Gernsbacher has written, as all sources are provided. Same goes for me. All you need to do is read all the primary sources, and have some notion of what the standards are for the nonautistic population.

    I’m a much harsher critic of cognitive science and neuroscience in autism than of ABA-based autism interventions. According to Pumma, this means I “don’t like” cognitive science and neuroscience (the fields I work in), and my work in these areas should be ignored.

    “…or just hold them to a higher standard”

    The prevailing view is that autistics don’t deserve to benefit from and be protected by recognized standards of science and ethics. So it’s not surprising that Pumma promotes this view also.

    My view is that the recognized standards of science and ethics that automatically protect and benefit nonautistics should also protect and benefit autistics. E.g., I think autistics deserve good experimental design.

    There are 47 years of research into ABA-based autism interventions, and in all that time, there is one small-N RCT where the intended comparison between randomized groups was actually carried out. That’s Smith, Groen & Wynn (2000, 2001; don’t forget the two errata).

    If you look at the data, including the two published authors’ errata, this RCT reported no results at all for children with the specific diagnosis of autism (e.g., in the experimental group, their VABS daily living standard scores fell by 10 points pre-post, compared to a smaller loss in the controls ; not a significant result). The few results reported, which did not include a reported result in language, were due to the PDD-NOS children.

    This is regardless that in the experimental group, children received up to 63 months of intensive ABA-based treatment (as opposed to the non-intensive intervention received by the controls). There was a huge range of total amount of treatment in the experimental group and no indication that this was at all related to outcome measures.

    And the groups were very small, with 15 children in the experimental group (7 autistic, 8 PDD-NOS) and 13 in the control group (7 autistic, 6 PDD-NOS).

    If you doubt any of this, you need only read the paper and its published errata. How the major errors got by peer review is a good question.

    Re the surgeon general’s report, the sole primary source cited in support of ABA-based interventions is Lovaas (1987) and follow-up. Apart from its major weaknesses in methodology (e.g., it is not a true experimental design) and reporting, this study was, according to its author and design, dependent for its results on contingent aversives. As can be established by reading Lovaas (1987; also, for the importance of aversive procedures in this study, see Lovaas et al., 1987, and Epstein et al., 1985), a lot of trouble was taken to demonstrate that contingent aversives were essential in achieving the reported results. So the US surgeon general was accepting a treatment of autistics that was reported only to be effective if preschool children were systematically hit. By 1999 (after 38 years of research into ABA-based autism interventions), there was no other published prospective controlled trial of ABA with groups of 10 or more autistic children.

  8. Ms. Clark September 19, 2008 at 20:14 #

    Part of the legacy of ABA quackery is biomed quackery. What the ABA sellers promote is that your child had better get as close to 40 hours or more of DTTs or some other form of ABA starting as early as possible, or else. Or else he’s doomed to a life of autism, and will probably end up in an institution. Oh, and if you read the fine print, for the kids who get all this extremely expensive therapy probably maybe only 40% of the will turn out normal.

    The numbers they like to throw around are $50,000 a year for this therapy.

    So parents who aren’t handed this on a platter by someone, or aren’t wealthy enough to pay for it out of pocket, start freaking out that their baby is going to end up in an institution because they can’t afford $50,000 a year. BUT for some they can afford $20,000 a year and so then some quack or a shill for a quack walks up and says, “You can cure your baby for half the price of one year of ABA with this $15,000 HBOT balloon and oxygen concentrators, plus methyl B12 injections, camel’s milk and a few visits to a scamming quack in Illinois or New Jersey.

  9. pumma September 19, 2008 at 20:17 #

    I wonder how such egregious results could get past peer review and how the abstract could be so misleading then. I become suspicious about the work of researchers if I sense conflicting intentions from them. I’m not against standards of science, but I just sense so much apathy out there and opposition to something beneficial being done. I know that you care about rigorous standards in evaluating treatments (as long as the treatments aren’t really profitable like powerful medications).

  10. Patrick September 19, 2008 at 22:40 #

    ‘I know that you care about rigorous standards in evaluating treatments (as long as the treatments aren’t really profitable like powerful medications).’

    The part inside the parentheses here doesn’t even belong. Most of us care that ALL treatments meet rigorous standards.

    Unless of course one is trying to bait the conversation into the pharmacy shill line of hogwash.

  11. Lewis Docherty July 13, 2014 at 02:35 #

    The idea that autism is worse than measles and polio is ridiculous and it’s straight up discrimination. Some of the most intelligent people the world has ever known were autistic including Albert Einstein. Did he work in McDonald’s? I don’t think so.

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