A recent study says:
Receiving multiple vaccinations does not increase a child’s risk of being hospitalized due to infectious diseases, a study has concluded.
In fact it goes on to say:
Writing in JAMA, the team led by Anders Hviid said they found 15 associations where vaccination appeared to protect against conditions other than those it was targeted at.
Which is a good thing. Vaccine’s are not only meeting but _exceeding_ their job description. At the end of the BBC piece though is a quote from Jackie Fletcher:
I believe there is a susceptible group of children who have vulnerable immune systems, and could be identified before vaccinations were given.
Jackie Fletcher is from the anti-vaccination group JABS who campaign principally against the MMR jab and supports Wakefield’s flawed study into the links between MMR and autism (Interestingly, Fletcher says that ‘Doctor Wakefield has _described a *new condition* called autistic enterocolitis_ which in essence is late onset autism with bowel problems’).
JABS says on their ‘about us‘ page:
JABS as a self-help group neither recommends nor advises against vaccinations but we aim to promote understanding about immunisations and offer basic support to any parent whose child has a health problem after vaccination.
Neither recommends nor advises…hmmmm…..JABS then offers a list of questions to ask yourself before vaccination. The very first one is:
Does my child really need this vaccination?
Some of the following questions have merit (‘is my child well enough to have this vaccine’?) but lets not pretend here. The tone is set with that first question. And what a question. It speaks to the insular over-protective mother-hen in all of us ‘Jabs hurt my baby, do I _need_ to hurt my baby?’
The answer is, of course, ‘Yes!’ and not only for my children but _all_ children. As parents shy away from vaccines stories are once again appearing about child hospitalisation and death as a direct result of lack of vaccination.
And yet so many studies absolve vaccines of blame in autism or disease. Does this stop the anti-vax people? Hell no! They want more research and they want it to keep coming until something is found or the money runs out.
Which brings us neatly to this:
UK research into the causes and treatment of autism is seriously behind that of other countries, a report says. It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.
Possible interventions: *8%*. Eight percent. *Eight*. And yet:
When asked, 75% of families wanted more attention paid to environmental factors, while 62% of scientists gave preference to genetic research.
So these two groups of people fall into the above 22% dedicated to ’cause’.
Amazing isn’t it? JABS, Generation Rescue and their ilk continue to pursue highly political campaigns to go after vaccines and 8% are left with enough time and funding to research interventions _that will help_ .
Maybe its just me but our priorities seem to be totally out of whack. As my tiara bedecked friend the AutismDiva says:
What the parents should be worrying about is their children’s futures. If the mercury moms put all that money and energy into building programs that would provide jobs and housing and care for their kids, some of whom will be able to do fine without any help, and some of whom will need very special help, not only would the autistic adults alive now benefit but the programs would be established by the time the kids got to be adults, the wrinkles could get ironed out.
But thats just good common sense. Nothing for RFK Jr or David Kirby to gnash their teeth, knot their brow and cry crocodile tears over in that statement.
Yay for the eight percent.
Left Brain Right Brain 
problem is, most of the ‘anti-vaccine’ people are too committed to their crusade to care about what anyone says contrary to their belief. like any person who’s found ‘god’.
whenever emotion runs the show, its practically imppossible to get people to follow logical reasoning – even if you can get them to listen to you in the first place.
it is not uncommon for ‘medical research money’ to be allocated according to symptoms > causes > interventions > associations. after all, drug companies are looking for consumable options – and if you’re only covering symptoms, you won’t accidentally fix the problem and miss out of future revenue. and from a public health perspective, there is a quicker ‘response’ to symptoms than to understanding what’s going on in the first place.
how often do corporate-types bother asking customers what they want. and then deliver?
It’s also interesting that yet another study showed that vaccines don’t affect the immune system.
But wait, isn’t the main plank of the thimerosal-autism platform the fact that autism is a disease of autoimmunity, mediated by the mercury in vaccines?
So do vaccines mess with the immune system or not?
I do know that vaccines have severely reduced the incidence of diseases that used to routinely kill children (and adults) on a regular basis. A little over a hundred years ago, only about half of all children born survived to adulthood. There are many reasons for that, but a significant part of it is that they’re not having to face life-threatening illnesses like diptheria, measles (yes, it can kill you, and it can do other very bad damage even if you survive), pertussis, tetanus, etc.
I’ve read a great deal of history (because I’m a nerd like that) and the seriousness of these illnesses shouldn’t be overlooked. They are serious, they are still “out there”, they are still killing people.
The research communities priorities are out of whack, IMHO, but most of that blame lies squarely at themedical/scientific researchers feet for 2 reasons
1) Autism is a complex beast and most of the researchers are highly specialised, so we end up with pirecemeal research that is not drawn together as a whole, and which does not leverage off other work in disciplines who are also studying autism
2) Intervention generally presumes that you have some understanding of cause and hence can postulate interventions that could help, test these out and then show intervention works. For the scientific community there’s still such holes in their understanding, that noone seems to want to take a leap and test out medical interventions, beyond pharmocology for specific symptoms.
However, I feel the main blame forthe lack of intervention research (and practice) lies with educational policymakers. Perhaps it’s “Not invented here syndorme” – I don’t know — but it still boggles my mind.! Lovaas’s ABA work reaches back a very long time, with peer reviewed studies showing it to be an effective intervention for some children. Has it been taken up widely in UK? No — and it completely mystifies me why it hasn’t. Verbal behaviour goes back to Skinner in the 50’s, and has been successfully practiced since the 80’s and 90’s with ASD kids by Drs. Sundberg, Partington and Carbone. Greenspans’ Floortime has been around since the 80’s too, with demonstrated success.
I remember watching a Newsnight piece on BBC2 a few years back about ASD interventions where they went to California to interview Lovaas — it was the sort of good TV that Newsnight can do, where they identify positive policies or practices in other countries and present these to the public in an informed manner — I guess with the hope that policymakers will be watching and get off their bums and go and find out about these.
I’m really at a loss to understand what the UK educational policymakers are up to They could be doing much more in terms of pilot studies around the country assessing early childhood interventions, drawing on the prior expereince of countries like the USA, who’ve plowed a lot of money into this already. Why is it that intervention services for 2-5 year olds in the UK are so patchy, disorgansed and under-funded?
It was interesting to see Special Education come up during the last election as an issue, but depressing to then see the discussion descend into a “We’re going to spend more that you — no you’re not – yes we are” sort of discussion. Spend it on what? I bet if you asked Ruth Kelly and whoever the shadow Educational minister is today they wouldn’t have a clue … and there lies the problem.
Ian
Autism is a political football sure enough (in fact most of Special Needs education is – trying to get a Statement is an art in itself) but politicos are driven by populist movements and if a politician sees that 75% of voters in this issue want to see research on environmental causes then thats where the money will flow.
I have lots of reservations about ABA. A lot of autistics I spoke to who grew up with ABA say that the Lovass version is little more than legitimised abuse. Certainly watching it happen is more than enough to give me serious reservations about it. I know modern ABA is not Lovaas based but I still hear less than great things about it. Enough to make me think there has to be a better way than that.
2 points
1) I think special needs education is a not a vote winner, since the numbers are relatively small. I think a proper questionaire of parents with special needs kids would definitely identify that they want a lot, lot more money spent on interventions, than currently is. Obviously these parents might want some MRC money spent on causes (including environmental causes), but I think they’d be expecting the majority of the money to be spent on actual, proven educational interventions. For the politicians/policy makers to leave young special needs kids with no/little appropriate educational interventions is simply wrong.
2) My kids have undergone lots of educational intervention. My eldest son started out on strict Lovaas ABA which, for him, worked well for 1 year – it got him to the point where he could attend and have the rudiments of speech. Also, note ABA has developed markedly over the last 30 years — people understand much more what works/ what doesn’t. It’s not applied in such a blind faith way as it was originally. Plus, if you’ve had conversations with autistics who’ve undergone ABA then I assume it’s been successful. Chemotheraphy is essentially legitimed abiuse of ones body, but it’s done because it’s been proven to be of use.
We moved on then to Verbal Behaviour therapy, which is now used widely in the US. I’ve never seen any reservations about this technique -it doesn’t look abusive on video.
We’re now moving over to a more Floortime approach. As Greenspan points out, given our more modern understanding of the brain and ASD, Floorime/DIR is a more rounded, less bevioural approach — it deals with the whole child. It focusses on relationships and social interactions.
I don’t know anyone who’s actually experienced and been involved in ABA therapy would advocate it as the only approach for kids. It’s _an_ approach – it works for some, it doesn’t work for others. Children today are licky, since intervention research has progressed rapidly over the last 30 years. Provision, as usual lags well behind, so that for instance in the US ABA therapy has really only be widely available in the last 10-15 years. Verbal behavious has only become available outside a few centres in the last 5 years.
I’m now more enamoured with non-bevioural approaches, like Floortime. The rub here is that there is very little available provision for such techniques anywhere.. Money spent on pilot studies of non-bevioural approaches in the UK would be well spent.
There are no controlled trials of a verbal behaviour treatment in autism. Dr Carbone does not surface in Medline; Dr Partington appears once in conjunction with autism; Dr Sundberg appears twice, once overlapping with Dr Partington’s appearance, and once in a review co-authored by Jack Michael. Dr Micheal is the editor of the non-Medline indexed journal “The Analysis of Verbal Behavior”, and takes the position that autism is an “error of reification”, ie, that it doesn’t exist as a real entity.
In Canada, the new, improved ABA has resulted in children staying in ABA indefinitely (ABA is being demanded without limit for all ages). The aversives in Lovaas (1987) have been replaced by massive amounts of extrinsic reinforcers. Children may remain dependent on food reinforcers after three years in treatment. In many legal cases, it has been ruled that children in these programs get “distressed” and “out of control” quite apart from losing what they’ve “learned” when the level of reinforcement that they are dependent on is in any way diminished, even after they’ve been in ABA for many years. It has been ruled that any reduction of reinforcement constitutes “irreparable harm” of these school-aged children.
There are no peer-reviewed published adult outcome studies of any ABA program, Lovaas-type or not. There is not one published peer-reviewed outcome study of school-aged outcomes of a non-aversive ABA treatment. The New York Times recently published an article showing the ABA “successes” struggling and requiring ever more interventions, etc http://www.nytimes.com/2005/02/26/health/26autism.html?ex=1123905600&en=6bcc95c31aa6151b&ei=5070 .
A recent Canadian legal case shows that kids in ABA programs here learn that autism is a very bad thing, and that they have to get rid of all their autism, and that all the autism in everyone should be gotten rid of.
Contrast all of this with this account http://www.isn.net/~jypsy/AuSpin/senate05.htm
As for moving on from Lovaas (1987), recent (Eikeseth et al, 2002) and upcoming (Sallows & Graupner, in press) controlled trials continue to use The Me Book (Lovaas, 1981) as the “manual” describing the treatment for the experimental group, with the sole caveat that aversives are no longer used.
A recent Canadian study (Eaves & Ho, 2004) shows no effect of kind or amount of treatment (including ABA, which half the 40 children underwent) on outcomes in the assumed-to-be-critical 2-5yr old range. Some autistics did really well; some did poorly–but this was regardless of what kind of treatment or how much treatment was used.
This is apart from ethical issues which I’ve written about here http://www.sentex.net/~nexus23/naa_aba.html and here http://www.sentex.net/~nexus23/naa_vic.html among other places.
Re chemotherapy >sigh
Sorry, my last line should have been:
Re chemotherapy, *sigh*. Autism equals cancer strikes again.
“Plus, if you’ve had conversations with autistics who’ve undergone ABA then I assume it’s been successful.”
Conversations can be non-verbal Ian – like this one – lots of autistics communicate just fine without ABA.
Michelle: Your comment got screwed up due to a HTML formatter called Textile – see the link next to the comment box. If you avoid those particular combinations everything should be OK.
My nephew went through about 2 years of ABA and it helped him a lot. It certainly wasn’t the abusive kind of ABA. They did use rewards (which bothered me – it reminded me of training a dog) but they used a method that prevented the kids from getting dependent on them. I’m not sure how, but I think they changed rewards each time and they were either verbal or playing with a toy. I believe food rewards were rarely used, if used at all.
ABA doesn’t help all children and some forms of ABA are abusive or addictive (dependence on rewards). But ABA, when done the right way can be a great intervention. My nephew is now 5 years old, he goes to a regular kindergarten and the other kids love him. Nobody can tell he’s autistic. He isn’t hooked on rewards. He’s doing a lot better now than he did 3 years ago, and there’s no doubt in my mind that it’s because of ABA.
That’s my perspective. We’ll have to wait a few years till he’s an adult to get his perspective on this.
Micelle
I never said autism equals cancer. That would be a fatuous statement only an ignoramous would say. What I was referring to was my own life experience. In my family we have had to decide whether to do ABA intervention with a child (all that wa son offer at the time) or not. Likewise, we’ve had the decision about chemotherapy. Neither decision was taken lightly, both had their negative sides, but both offered improvement and help.
Ian
Re: ABA Therapy:
It would be nice to say that ABA has been scientifically validated, but that is not entirely true. The best results have come from Lovaas and those who worked with him as graduate students. Other researchers have been less successful. The few studies that have looked at ABA vs sham therapy (i.e. interacting with the child for the same amount of time in a non-ABA fashion) have not been supportive of ABA.
It may be that ABA is no better than simply playing with (or “interacting” with) the child – an idea that ABA therapists strenuously resist, not surprisingly.
Secondly, there is an often-overlooked ethical issue here – and I mean apart from the overt child abuse that was a part of the original Lovaas work. Simply put, is it possible that ABA simply teaches a child that it is less stressful to put up with a noxious stimulus (e.g. buzzing fluorescents, making eye contact, etc.) that it is to react in what to them is a normal fashion?
Isn’t this what ABA is, in fact – operant conditioning? Even with the slaps and screams removed, it looks like operant conditioning to me. Sit in your chair nice and straight or you’ll have to put up with people touching you and “physically prompting” you to do it right. If physical contact is aversive to the child, how is this different from the overt abuse of slapping and screaming?
The comment has been made that some medical therapies are “abuse” that we tolerate because it will make us (or our children) better. This is certainly true of a number of medical therapies – I recently put up with back surgery to make my back better.
However, there is a big difference between forcing a child to undergo a painful or unpleasant medical treatment to make them feel better in the long run – it is a completely thing to make them undergo something painful or unpleasant to make their parents feel better.
If ABA is truly helping the children become better able to function in their world – if it makes their lives easier, better, richer – then all for the good. However, I haven’t heard from any autistic person that their life was made better by ABA – has anyone?
Grist for the mill,
Prometheus
Re what Prometheus wrote, in fact, Dr Lovaas’ students have had mixed results. Tristram Smith, his heir apparent, has had many failures, most notably Smith, Groen & Wynn (2000), an ABA randomized controlled trial that was conducted at UCLA.
Glen Sallows, another student, has an article in press (Sallows & Graupner) which claims to replicate the results in Lovaas (1987), but when these results were reported after one (1999) and three (2001) years, there was the “unanticipated finding” of the only adequately matched control group doing as well as the experimental group. This argues against treatment fidelity and intensity having significant effect, which makes it difficult to argue for the treatment itself.
Re ethical concerns, they include all the questions raised when a powerful behaviour therapy is applied to clients who can’t consent. They include the central assumption that autism has no value (no more so than cancer, the ubiquitous comparator), and that there is nothing at all lost, to individuals or society, by attempting or succeeding to produce children who are “indistinguishable” from their peers. Those are some of the things I’ve written about.
There is the additional problem of many behaviour analysts having little interest in science in other areas, and therefore ignoring empirically-established differences (including strengths unavailable to the typical population) in autistic cognition. The assumption in ABA in autism is that behaviour is behaviour, no matter who emits it. Therefore, autistics should and must behave, develop, learn, etc, “right”, which means “like a non-autistic”, because this is the acceptable and optimal way to behave (etc) in society. No consideration is given to what might be optimal or adaptive behaviour (etc) for an autistic person: autism is instead seen as a series of maladaptive and otherwise worthless behaviours which have to be extinguished, and replaced with the right, non-autistic behaviours.
And so on (that’s greatly simplifying what I’ve argued elsewhere). I have specific concerns about autistic learning, which I’ve detailed in the articles I linked to in my previous message, among other places.
Autism=cancer is in Canadian jurisprudence (re it being fatuous) via ABA litigation, and has been used prominently in Canada by autism societies, FEAT groups, etc, and by the media, including by the most influential editorial board in Canada. Autism Society Canada deployed the ABA-is-like-cancer-treatment comparison in a national newspaper last year (quote is somewhere in here http://www.sentex.net/~nexus23/naa_asol.html ). We have autism equals AIDS here, too, in a trial decision, courtesy of the testimony of a behaviour analyst. We more recently have autism compared to heart disease (also in an ABA context). This makes me wonder why autism is almost invariably compared, directly or otherwise, to universally dreaded and unwanted progressive diseases known to be fatal if not treated.
Everyday life dishes out ABA, sort of, or it dishes out operant conditioning. Autistics get shaped by ever present rejection and abuse, some more than others obviously, as well as by just learning and applying what they learn. What we say is that inside we are still autistic and struggling to act in an acceptable way.
Autistics know that eye contact is normal in Western culture anyway, and that they might get treated better if they did normal eye contact, still most choose not to do normal eye contact because it’s too difficult. Some do the boring right through you eye contact because they can’t modulate it. That group might be able to learn to look away, but already they (we) are devoting tremendous amounts of mental energy just to talk to someone, especially in a new situation, it becomes impossible to do everything normal in real time.
How many plates can a person keep “spinning” before lots of them start to crash to the floor?
But that goal is always held out for us, “act perfectly normal”. It seems like it would be better if people with “back problems” were allowed to act like people with “back problems” instead of asking them to act , or try to act, like people who don’t have “back problems”. If you get Autism Diva’s drift. 🙂
Thanks for your comment on ABA, Prometheus. I hope your back is better now.
Kev
Sure, but when I said conversations, I did mean all forms of communication. Lots of autistics (children and adults) have great difficulty holding a conversation – to the point of not fully understanding what a conversation actually is. Some have symptoms so marked that they simply can’t focus enough to have a conversation, whether it be verbal, via computer or something like PECS.
Ian
Some points about previous posts
1)I woun’t expect to find VB papers on Medline, as I equally wouldn’t expect to fnd articles on Medline about phonics. These are two techniques designed to help children learn. Perhaps you’ve never seen verbal behaviour in practice — it is designed to help children extend their sentance lengths, to make appropriate use of verbs and nouns. My son’s reinfocers were games. Sounds a lot like teaching a “normal” child who needs a little help with something they’re not good at to me — or is helping your struggling kid with speech now considered child abuse?
2) I’m not a big proponent of ABA. When ABA came out though, what the hell was the alternative “intervention” for kids. Answer = none. With 20/20 highsight everyone can be right all the time — people had to make decisions which they had to live with based on the best available information at the time.
3) I’m more enamoured with Floortime (again I don’t expect to fnd this on Medline) by Greenspan.This is not a behavioural approach. Essentially this is just a specialied way of playing with a child. I can’t see how anyone could object to this, but given the responses I’ve seen to date on this blog, I’m sure someoe will pop up and claim it’s the devils work or somesuch. I’m sure it’s not been scientifically proven, with contorl groups and I’m sure there are no longitudinal studies on it, but with my eldest child we’re seeing extremely positive improvements in socio-emotional development and speech. It’s made him much more engaged with others, less zoned out. That’s my opinion, although I’m sure someones going to tell me I’m wrong and that it’s normal development I’m observing…
4) Going back to original point that Kev made – 8% on research in UK – seems to have got lost in all the distractions of whether ABA is good or bad. Because only 8% is spent on intervention research no one is finding out what works, what doesn’t work, so our understanding of interventions doesn’t move forward — who benefits from this inaction, certainly not the kids.
5) I’m most concerned with the UK, not the US, not Canada, the UK. The UK has woeful provision of interventions for ASD kids, like S&L, OT, PT and appropriate special education settings. While everyone is banging their chest about ABA not being scientifically proven, ABA being child abuse, autistics don’t need to be helped, the politicos just salivate as they watch the ASD community turn on itself, leaving them the perfect excuse to do sweet F.A., which is what they’d rather do.
I can empathise with your frustration with the political system (espeically at the educational end of that system, Health seems much more organised) but I do think its important that we use methods that don’t cause more issues than they solve. Some implementations of ABA, esp at the Lovaas end of the spectrum really do seem to be based on aversives with abuse as the tool of choice. Thats simply unacceptable whatever country you live in.
Once upon a time, as late as the 1970’s, homosexuality was considered an illness that could be cured with Electroshock Therapy. Today that idea seems simply alien (I hope!) – something is not always better than nothing.
I think you’re being a little unfair – no one I’ve seen is claiming autistics don’t need to be helped, least of all autistics themselves who as far as I can see readily admit there are areas that they require help in. However, it doesn’t seem unreasonable to expect that help to be administered respectfully.
Your fourth point I entirely agree with. What we do to address that though would seem to be a movement away from obsessing about what _causes_ autism and focus much more on developing valid interventions that don’t rely on such potentially harmful methods (physically and mentally harmful).
Granted, when ABA came out (in the late 1960’s or early 1970’s), there was not much other intervention…other than psychotherapy. I have a friend whose autistic brother (who is now 53 years old) underwent psychoanalysis for ten years. Their family had lots of money, apparently.
In retrospect, it might have been more effective if the parents had gotten the psychoanalysis, but that’s another issue.
And you can find “floortime” on MedLine – and that would be where I’d expect to find it, as a human therapy – as follows:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14678681&itool=iconabstr&query_hl=4
There’s nothing other than this one case report, but it’s something.
One issue that I’d like to focus on is the concern that only 8% of autism research money in the UK is spent on researching treatments. I’m taking this figure as true without checking it, but it doesn’t seem too unreasonable to me.
After all, you have a disorder that has a rather vague definition and shows every sign of being a number of similar disorders – including a goodly number of people who insist, rather eloquently and forcefully, that they do not have a disorder.
Perhaps it would be better to find out what autism is before chasing after treatments. If autism is a number of disorders (including a number of people without a disorder who have similar behaviors), then it would be highly improbable to find an effective treatment before you can separate those disorders from each other (and from the people without a disorder).
Perhaps the best thing to do is find out what causes autism and then decide how to proceed from there. As the diagnosis currently stands, even the 8% spent on research for a treatment is probably wasted effort.
Standing by for flames,
Prometheus
Lovaas’ basis for treating “autism” was there was no such thing as “autism”. I think Michelle can explain that further, but he basically didn’t believe there was a “disorder” so much as a bunch of kids with behaviors that could be trained out of them, or tortured out of them, in the beginning, particularly.
If people had read the paper by Kanner on how his orginal Kanner autistics had turned out and patterned the treatment of autistics on the experiences and outcomes of those 11 kids… at least there would not have been ABA or Lovaas slapping kids or drugging them with LSD… DO NOT get Autism Diva STARTED! …
Sorry.
Seriously, read that paper. It’s to be found in the http://www.neurodiversity.com library as are lots of other goodies.
Why in the world is that the only place on the net that it is available? Why isn’t this the primer for ALL autism conversations?
So many problems came out of NO one reading what happened to those original 11 and going from there.
Or maybe Lovaas read it and didn’t like the bit about Don going to live with the family on the farm and making little grave markers for “John Snail Lewis” and Martha Bluebird Lewis and Buster Moth Lewis … Autism Diva loves that Don fellow.
“kanner 102 :http://autismdiva.blogspot.com/2005/08/kanner-autism-102.html”
Never matter that Don ended up getting a degree and working in a bank as a teller.
There’s no money in telling people that they just need to try to teach autistic kids using what it is that they are interested in, there’s plenty of money in 40 hours a week of training.
MOFFRA
Mothers and Others for Free Range Autistics! (standing barefoot wearing apron – Autism Diva raises fist in air) That’s a godzilla reference for those of you who aren’t part of the IN crowd.
http://www.geocities.com/autistry/epidemic.html
Verbal Behaviour, like Pivotal Response Training and incidental learning, is ABA. See Dr Carbone’s page here http://www.drcarbone.net/pages/Home.html . Dr Carbone is a BCBA. I think the certification board would be surprised to hear that VB is not a form of ABA. If you are a VB fan, you are an ABA fan. ABA is the applied form of behaviour science. Journals featuring ABA are Medline indexed (e.g., JABA, JEAB, The Behavior Analyst). The journal “The Analysis of Verbal Behavior” is published by the Association for Behavior Analysis–the ABA itself, the international body which promotes ABA.
There are 31 Medline entries for “phonics”. There are 136 for “phonic”, some of which are relevant. There are a few hundred thousand Medline entries for “learning”, which is one of my areas.
There is such a thing as learning without reinforcement (as I wrote in both of the articles I linked to, up there somewhere), or without teaching, and the science shows that autistics are especially good at this kind of learning. Unfortunately, until very recently no one has cared about how autistics learn well (this is one of my efforts; it is in a book somewhere, among other places). Autistics learned well, long before Ferster conducted the first autism-ABA experiment in 1961. And this does show up in the science, and continues to.
The science also shows how unlikely it is that autism is a bunch of different things. But I’ve already argued with Prometheus about this elsewhere (looks like I lost; those lovely ERPs must be an illusion…).
Prometheus – good points about treatment but in my opinion there’s a world of difference between a _treatment_ (which – linguistically at least -implies treating ‘the whole’ of autism) and seems almost interchangable with _cure_ and the idea of _interventions_ which zone in very specifically on areas that require very specific help e.g. speech therpay/PECS/etc for communication.
Interventions don’t treat autism (my personal belief is that *autism* doesn’t require treatment) but they do tackle the sometimes disabling comorbidities that accompny it.
I would put it like this, whether or not autism *requires* treatment, it doesn’t *respond* to treatment, but a lack of ability to communicate so that others get your meaning… does respond to “treatment” or interventions or teaching.
Autism stays no matter what. Just like there isn’t a cure for blue eyes, but you *can* put on brown contacts, you can get an autistic to act less autistic to a point, but he’s still autistic. If a person is changing his apparent eye color because of racist pressure then there is an ethical problem with wearing brown contacts.
We can go off on the idea that all autistics ARE communicating all the time, but that people aren’t picking up what they are saying, too, which is helpful, but realistically most parents want their kids to ‘speak” enough “neurotypical” to get the basics done, Most autistics have needs that must be met through communication with NTs, so it’s good to teach the kids a way to communicate with people who refuse to learn the autistic’s form of communication.
Many autism spectrum folks can speak just fine. But some autistics do much better with a keyboard or sign language or something else and that is seen as a failure that they aren’t talking.
If non-autistics could figure out that we see them and can measure their reactions, etc, pretty well without foveating them, that would be good.
Foveating?
Autism Diva assigns you all to go look up “foveating” if you don’t already know what it means.
Cool, I learned a new word! Thanks Autism Diva.
I’ve been very focused (one could even say perseverating!) on the teaching and learning processes with my two boys lately. I want them to learn to be as effective as possible in the ‘typical’ world. I don’t view it as trying to ‘change’ the autism. I see it as having the same intent that I have to help any child grow and learn. As parents we’re constantly teaching our kids, whether they be autistic, NTs or whatever. As long as the goals and methods are appropriate, its a good thing.
The difficult thing is, that at this point, society puts most of the burden on the autistics to adapt, rather than adaptation by all. Over time, I think this can change as more and more people become exposed to autism. Let’s hope.
Shawn
Thank you, Kev, for pointing out that there is a vast difference between treatment and intervention. I tend to use the two interchangeably and incorrectly. Clearly, there are some people with the diagnosis of autism that might benefit from some sort of intervention to help them function within society, but there is no certainty that any treatment that would, could or should help them.
Michelle, I have no idea what ERP’s are – you got me there. I do a lot of genetic work and the genetics of autism suggest a multitude of genetic determinants. There is – I must admit – a chance that all of these genetic loci identified through linkage disequilibrium may all result in the same difference. A small chance, but still a chance.
I think that Michelle and I are arguing at cross purposes here. I have no expertise in the behavioral diagnosis of autism and so I accept her assertion that autism can be predictably and repeatably diagnosed through the tests used. This does not eliminate the possibility that the same behaviors, responses etc. can be caused by a variety of different genetic polymorphisms and/or biochemical differences.
Prometheus
Evoked potentials – event related potentials.
They are measured with EEG cap things. You have a person listen to a sound for instance, and their brain ought to react with a certain pattern of electricity, they give the ERPs cutesy numbered names. Like P3a. The following is part of a paper written by Autism Diva in June.
“A study done by Ceponiené, et al., (2003) also used autistic children. This experiment measured event related brain potentials (ERPs) of children exposed to artificially created sounds. They compared auditory sensory ERPs in the children following a simulated vowel sound as well as acoustically matched simple tones and complex tones. By looking at mismatch negativity (MMN), a component which taps the neural sound representation underlying conscious perception, and the P3a component that shows involuntary intentional switching, they hoped to see how children with autism attend to sounds. Their performance would then be compared to that of a control group. MMN is elicited by the perception of “deviant†sounds which occur interspersed with repeated “standard†or more common seeming sounds.
The subjects for this study included nine high functioning autistic children and 10 age and sex matched controls with no reported hearing or academic problems. The researchers created one standard and one deviant stimulus for each of the three stimulus types: simple tones, complex tones, and vowels, with the goal of creating stimuli that could be graded from acoustically simple to complex. They used a Semisynthetic Speech Generation method to generate the vowel tone in a realistic version and a deviant version. The simple tone corresponded to the strongest formant of the vowel spectrum. The complex tone was composed of four sinusoidal tones with the frequency and intensity levels matching the strongest harmonics in the vicinity of the formants of the vowel. Stimuli of each class were presented in blocks, with 400 stimuli each, in each block there were 85% standard stimuli interspersed with 7% tones with deviating frequency and 7% with deviating duration. ERPs were measured with electrodes attached to the subjects as is done in electroencephalograms.
The study showed that complex tones elicited larger MMN amplitude than the simple tones in both groups of children, indicating that both control and autistic groups were able to discriminate frequency changes to the same extent. In the control group the P3a was significantly present in all stimulus conditions. In children with autism no P3a was elicited by changes in the vowel, the control group had a normal P3a. response to the vowel stimulus. The autistic group showed normal reactions to the other non-vowel stimuli.
The researchers concluded that their work had shown that sensory sound processing was largely intact in these high-functioning autistic children and that attentional orienting to sound changes was impaired, but only for the speech-like vowel sound. This may explain why very young autistic children are sometimes thought to be deaf as they may not orient even to the sound of their name.”
Goodness, who knew Autism Diva could write stuff that dry and lacking in irony.
Independent Reviews of Early Intensive Behavioral Intervention
Report of the Maine Administrators of Services for Children with Disabilities:
“Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science.â€
“Early interventionists should leverage early autism diagnosis with the proven efficacy of intensive ABA for optimal outcome and long-term cost benefit.â€
“The importance of early, intensive intervention for children with autism cannot be overstated.â€
“Furthermore, early, intensive, effective intervention offers the hope of significant cost/benefit.â€
Maine Administrators of Services for Children with Disabilities (1999). Report of the MADSEC Autism Task Force. MADSEC, Manchester, ME
——————————————————————————–
Clinical Practice Guideline Report of the Recommendations for Autism and Pervasive Developmental Disorders by the New York State Department of Health:
“Based upon strong scientific evidence, it is recommended that principles of applied behavior analysis and behavior intervention strategies be included as an important element of any intervention program for young children with autism.â€
“Based upon the panel consensus opinion, it is recommended that all professional and paraprofessionals who function as therapists in an intensive behavioral intervention program receive regular supervision from a qualified professional with specific expertise in applied behavioral approaches.â€
“Based upon strong scientific evidence, it is important to include parents as active participants in the intervention team to the extent of their interests, resources, and abilities.â€
“Based upon strong scientific evidence, it is recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing and include regular consultation with a qualified professional.â€
New York State Department of Health Early Intervention Program. (1999). Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, Albany, NY.
Practice Parameters Consensus Panel of the following Professional Organizations and Agencies:
American Academy of Neurology
American Academy of Family Physicians
American Academy of Pediatrics
American Occupational Therapy Association
American Psychological Association
American Speech-Language Hearing Association
Society for Developmental and Behavioral Pediatrics
Autism Society of America
National Alliance for Autism Research
National Institute of Child Health & Human Development
National Institute of Mental Health
“The press for early identification comes from evidence gathered over the past 10 years that intensive early intervention in optimal educational settings results in improved outcomes in most young children with autism, including speech in 75% or more and significant increases in rates of developmental progress and intellectual performance.â€
“However, these kinds of outcomes have been documented only for children who receive 2 years or more of intensive intervention services during the preschool years.â€
“Autism must be recognized as a medical disorder, and managed care policy must cease to deny appropriate medical or other therapeutic care under the rubric of “developmental delay†or “mental health condition.â€
“Existing governmental agencies that provide services to individuals with developmental disabilities must also change their eligibility criteria to include all individuals on the autistic spectrum, whether or not the relatively narrow criteria for Autistic Disorder are met, who nonetheless must also receive the same adequate assessments, appropriate diagnoses, and treatment options as do those with the formal diagnosis of Autistic Disorder.â€
Filipek, P.A. et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders. 29, 439-484.
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Practice Parameters for Autism by the American Academy of Child and Adolescent Psychiatry:
“At the present time the best available evidence suggests the importance of appropriate and intensive educational interventions to foster acquisition of basic social, communicative, and cognitive skills related to ultimate outcome.â€
“Early and sustained intervention appears to be particularly important, regardless of the philosophy of the program, so long as a high degree of structure is provided. Such programs have typically incorporated behavior modification procedures and applied behavior analysis.â€
“These methods build upon a large body of research on the application of learning principles to the education of children with autism and related conditions.â€
“It is clear that behavioral interventions can significantly facilitate acquisition of language, social, and other skills and that behavioral improvement is helpful in reducing levels of parental stress.â€
“Considerable time (and money) is required for implementation of such programs, and older and more intellectually handicapped individuals are apparently less likely to respond.â€
Volkmar, F., Cook, E.H., Pomeroy, J., Realmuto, G. & Tanguay, P. (1999). Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 38 (Supplement), 32s-54s
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Mental Health: A Report of the U.S. Surgeon General:
“Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. ”
“A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Follow-up of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling.”
Satcher, D. (1999). Mental health: A report of the surgeon general. U.S. Public Health Service. Bethesda, MD.
We’re certainly guilty of doing work involving foveal vision, and departures from same, over here.
You can get ERPs from MEG also. Those ERPs are a lot more expensive though (and involve a lot of fancy physics, including the SQUID, or superconducting quantum interference device). There was a great MEG N400 study (the N400 is an ERP associated with semantic incongruity) at IMFAR this year. The N400 was one of my original obsessions, and here was a gang at Oxford cranking out an N400 study and showing lovely, striking differences in autistic brain activation, in the presence of typical performance.
Cognitive science–whether via RTs, inspection time, exposure time, SOAs, MEG, EEG, PET, fMRI, DTI, eye-tracking, etc, or combinations of same plus of course various tasks–finds out how brains do things. And autistic brains, no matter how they come to exist via genetics, do things differently.
Blimey, well I just fought my non-science brain through that lot ;o)
I think the Diva said it best:
“I would put it like this, whether or not autism requires treatment, it doesn’t respond to treatment, but a lack of ability to communicate so that others get your meaning… does respond to “treatment†or interventions or teaching.
Autism stays no matter what. Just like there isn’t a cure for blue eyes, but you can put on brown contacts, you can get an autistic to act less autistic to a point, but he’s still autistic. If a person is changing his apparent eye color because of racist pressure then there is an ethical problem with wearing brown contacts.”
Which seems to me to address both the practical and ethical issues regarding treatment/intervention.
I’ve seen children recover completely from autism. Nearly ALL children who receive biomedical intervention have SOME kind of improvement…but about 30% actually RECOVER.
30% ain’t bad.
By Gina Green:
Recently, some opponents of ABA for autism have adopted a different
strategy. They assert that it is “unethical,†even “inhumane,†to provide or
seek intensive ABA intervention for children with autism. Embedded within
some presentations of this position are countless inaccuracies and
statements that are unsupported by facts: for example, assertions that
behavior analysts view autism as incompatible with achievement,
intelligence, and learning (in fact, the opposite is true); implications
that ABA always involves “aversives;†statements that behavior analysts do
not believe that some people on the autism spectrum have high levels of
intelligence and verbal skills; assertions that behavior analysts do not
seek proper consent for treatment and have never dealt with ethical issues
(again, the opposite is true, as even a cursory objective review of the
field would reveal); and too many others to mention here.
But the main tenet of this position seems to be that it is wrong to
try to change anyone in any way; rather all “differences†should somehow be
“accommodated†by society. On the surface it seems difficult to find fault
with that tenet, but follow it to its logical conclusions: All educational
efforts should be banned as unethical, because after all, they seek to
change people.
Likewise, all those who have medical, neurological, developmental, or
behavioral difficulties must be “accommodated†as “different†rather than
having any sort of treatment imposed on them, even if legal consent is
obtained (that is, it’s not just intensive ABA treatment for autism that is
“inhumane†by this logic, but all treatments). Society should accept
behaviors that are now considered illegal because they are merely
expressions of “differences.†And so on.
If it is true, as some have claimed, that there are scores of adult
“autistics†(their word, not mine) who are doing just fine without any
intervention whatsoever, that’s terrific. In my opinion, they should remain
free to choose to seek intervention or not, and to seek greater acceptance
by the broader society. But they should not be allowed to say what sorts of
interventions should or should not be available to other people with autism
or their families, any more than individuals who have medical conditions
should be allowed to dictate what others with those conditions can do.
Intensive ABA — a demonstrably effective intervention for children with
autism when it is competently delivered – should be available for families
who freely choose it. Imposing the “accommodation and support†ideology on
all people with autism and their families would amount to prohibiting those
who want and consent to effective treatment from obtaining it. What could be
more unethical and inhumane?
OK, this is turning into a thread on ABA. Nothing wrong with that except its getting way off-topic. Again, I’ve got no issue with topic-creep as such but I think this is an intriguing issue (ABA) and one that I don’t know an awful lot about.
What I propose is that we all hang-fire on this thread with ABA related comments please and I’m going to ask someone to ‘guest blog’ for me on the subject and we can discuss it more in depth there.
Ta.
NB: carry on with the Jabs, JABS… related comments by all means :o)
Is this topic drift?
Buttar has a gig on Sep. 4th in Texas at a conference for “CASD” what ever that is. A Mr. Kirby will be there.
Buttar will charge $800 American an hour to look a kid over, but the beauty part is that you don’t have to go on a waiting list, he says, but he can be your doctor right now.
Someone else is charging $300 an hour, which is a bargain, isn’t it?
I wonder how much David Kirby is charging an hour these days. I’m sure he can diagnose anyone with mercury poisoning based on his cunning ability to figure out how many mcgs of mercury someone got in a given “jab” or “shot” as we say on a given day.
This is one of those travelling lab circuses, too. Great Smokies lab will have a trained phelbotomist there to do blood draws (for genetics?). Saves you having to go to a real doctor.
They have someone there to speak on treating Down syndrome with “gene therapy”. Like it wasn’t bad enough they were robbing the parents of autistics, but now Kirby and Buttar are joining the group that will go after the Down syndrome parents, too.
The little pharma that makes Buttar’s minerals or packages them for him, will be there, as will “penta water”.
> With Dr. Kucera, M.D., Dr. Baggot, M.D., and Dr. Otero, M.D.
>
> Experienced Phlebotomist will be at the conference/outreach clinic.
>
> Orientation for the treatment program is free. Consultation is $300 per hour.
>
> Fax your insurance card to 512-306-$$$$.
>
> Make an appointment at 512-694-#### or 512-306-#### ask for Kazuko
or E-mail her kazuko@r…
>
> PRIVATE CONSULTATION
>
> DR. BUTTAR $800 PER HOUR
>
> CASD conference will give you an opportunity to become Dr. Buttar’s patient without being on the wait list.
>
> Call 512-694-$$$$ for an appointment.
>
> JW MARRIOTT HOTEL
>
> Group rate $99
Autism Diva wishes she could be there and videotape them . Erik never answered my questions, he’s alwasy so busy. He doesn’t answer questions.
Maybe he’ll answer this one: Erik would you pay Buttar $800 an hour for a private consultation?
Would you charge anyone $800 an hour for anything?
What do surgeons get paid these days for doing brain surgery or heart transplants? I bet it isn’t $800 an hour.
What insurance company is going to pay for anything coming out of that conference?
For the record Autism Diva did get $15 an hour once for housecleaning and errand running. She thought that was pretty extravagent.
$800 an hour, huh? I wonder if that’s going rate…
You know, I’ve read letters from autistic parents (it might have been somewhere on Kirby’s site, actually) that are paying upwards of $50K-$100K PER YEAR for treatment. In many cases, they’re for “biomedical” therapy, which is fascinating to me. These treatments have never been proven to work in a clinical trial, yet parents will shell out that kind of money for something unproven? (while at the same time decrying vaccines for their “lack of safety research” and railing about the evils of Big Pharma)
I wonder who’s going to be paying for the clinical trial for chelation therapy vis-a-vis autism at Arizona State university? Hopefully it’s being administered by a reputable organization that’s willing to fund participation of those children in said study – you know, like the evil pharmaceutical companies do.
I’m not defending Buttar at all but $800/hr is cheap, in my experience, if you see a doctor for 1 hour.
My eldest son when to the urologist last month who took one look at his penis and said the swelling would go down, eventually (duh!), and if not to come back. Total time 10 minutes. Total cost $400. This was the negotiated rate with my insurance too (down from $600) Last year my eldest son also put his hand through a glass pane. A plastic surgeon was deemed necessary by the E.R. staff, to sew up the small cut on this hand. He arrived 2 hours later, sewed it up in 5 minutes and left. Total cost to insurance – $2000…
I’m still debtaing having another career change and becoming a doctor…. once I work out what the most lucrative speciality is.
JP, as to who’s going to be paying for the chelation study at ASU, it’s being led by Jim Adams, a chemical engineer who is very much a believer in the vaccines-cause-autism business – http://www.eas.asu.edu/~autism/ and http://www.mercuryexposure.org/index.php?article_id=303 – golly gee, I wonder who would fund something like that!
$800 (US) an hour to consult with the inestimable Dr. Buttar? Doesn’t that seem a bit steep for an office visit? Maybe Ian lives somewhere that has outrageous medical costs, but here in the “heartland” (and in a big city), even initial office visits with a surgical specialist are more in the range of $150. Still expensive, but lots more reasonable that the $400-$600 Ian’s son was charged.
And what exactly do you get for your $800? It seems that Dr. Buttar is what rural folks around here call a “one-trick pony” – every case of autism he sees is caused by mercury poisoning and the only treatment for that is his TD-DMPS butter (excuse me, “buttar”). As the saying goes, to the man whose only tool is a hammer, every problem looks like a nail.
I can save everyone a bunch of money on this – just mail me a check for $100 (US) and (after the check clears) I’ll send you a neatly typed letter describing how your son or daughter is suffering from mercury poisoning and needs to be treated with TD-DMPS. You get the same results without needing to travel and you save $700 on the consultation.
For an additional $25, I’ll even throw in the lab results that show elevated blood, hair, urine and fecal mercury levels – all without having to collect those messy samples and at a significant saving over what one of the do-it-yourself labs would charge. You get the same results at a fraction of the cost!
Or you could give up the fantasy that some doctor whose main business was “detoxifying” the “worried well” prior to “discovering” autism is going to provide the magical “cure” for your child.
Your choice.
Prometheus.
Right.
I’m now in business. I do assessments and diagnoses and other stuff like that. At this point, they’s free.
I will charge folk 800 euros per hour, though, and for every part thereof, for my time. 🙂
Actually, if I do an assessment, there’s cost involved, and tests ain’t cheap. Also, for every hour that is spent with a client, there’s another 5 or 6 behind the scenes doing other stuff like scoring tests, writing reports, figuring what the results of tests and interviews and so on mean in the case in which they are being used.
800 euros mightn’t be far off the mark as reasonable, thinking about it.
Some years ago, I had a test to see whether I was immune to Rubella as I was thinking about starting a family.
I had a test and was found not to be immune and was offered the Rubella vaccination. I had it and ten days later developed horrendous symptoms where I lost strength, motorisation, I had perhpheral nerve damage and had to go into hospital. There I had a lumber puncture to see what was wrong. I was diagnosed as having Guillaine Barre Syndrome. I put this directly down to the vaccination. Joseph Heller who wrote the famous book ‘Catch 22’ wrote another book called ‘No laughing matter’. He describes how he too suffered from GBS. Not nice – not recommended as it travels up your body and if it gets to your lungs then you have to be put on a ventilator.
Jabs, I think, are scary things.
Jacky – no ones’ claiming vacines are 100% safe. Patently, given the existence of the vaccines injury compensation board in the UK, that position is untenable.
The point is (from my perspective as Dad to a little girl who is autistic): do vaccines cause autism? The answer is quite clearly ‘no’.