Tuesday, June 2, 2009

Why would autism speaks give Laurent Mottron half a million dollars?

I see that by looking at autism speaks' website that the good Dr. Laurent Mottron has received a grant in 2008 for three years for $448,827. That is nearly half a million dollars. It is just about $150,000 a year. Seems like a lot of money to me. I realize that some of the good doctor's research involves fMRI brain scans which I know are quite expensive. However, one wonders if this is money well spent on the part of autism speaks. How consistent is this funding with the stated goals of autism speaks considering what Dr. Mottron has said in the past?

A look at the home page of AS' web page gives their stated goals:

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;

Looking at an old post from Harold Doherty's blog we see that it would appear that Dr. Mottron feels that one of the main goals of an organization from which he has received nearly half a million dollars is nonsensical. One wonders why he was given this money if that is the case. One wonders what many people who went on walks for autism speaks with autistic children, thinking that the dollars they raised for research would go to help finding a cure for autism would think if they knew this man received so much of their money.

AS goes further in stating some of their goals:

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis (emphasis added). They seem to think that autism is an urgent health crisis.

What does Laurent Mottron think of autism?:

I think that autism is an example of a variation that has to be respected, first at an ethical level, but which does not have scientifically the status of a disease.

From wired magazine on Dr. Mottron:


From that day forward, he decided to challenge the disease model underlying most autism research. "I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different.

It would certainly appear that Dr. Mottron does not believe that autism is a global health crisis, that autism is not a disorder disease or possibly even disability but merely "a difference".

Again it seems strange to me that an organization would give someone who had such different beliefs from their own a half a million dollars or close to it. One possible explanation is that autism speaks was somehow compelled to believe that Mottron's work could have some practical applications at some point in time as we see from the description of the last paragraph that discusses his funding:

A more complete understanding of autistic individuals' strength in perception and visual reasoning may have important implications with respect to selecting and creating parenting, teaching, and workplace strategies that leverage these abilities.

If this statement is accurate then perhaps the persons who donated this money to autism speaks believing that all of the research went to finding a cure, prevention and people who like them believe autism is an urgent global health crisis might be getting some bang for the half million bucks they gave to this man. However, one wonders how the fact that at least some autistics do well on the block design subtest on the Wechsler, do well on certain other perceptual tests or memory tasks would help make parenting the child less challenging, would make it easier for a child to be taught academics and would make it easier for an autistic person to obtain and keep employment. I am very skeptical about this.

One of the problems with Mottron's research is the subject pool is limited in that they are high functioning autistics rather than lower functioning. He also uses a more proportionate amount of male autism research subjects versus females than are found in the general population of autistics. Therefore, assuming any of his work had any practical applications he would have to acknowledge these limitations. I realize, of course that this problem is not unique to Dr. Mottron but to a lot of autism research in general. Research involving EEGs and functional MRI scanning necessitate a cooperative subject who will not make movements during the study and create artifacts that would interfere with obtaining legitimate data. In Lindsay Oberman's mu wave suppression studies all the autistic subjects were high functioning males and this was likely the reason. Dr. Oberman did acknowledge the limitations of her work in the body of the study. Lower functioning autistics would likely not be compliant or be suitable research subjects for many of the autism studies that are currently funded.

Assuming the statements from Mottron and AS that his work could have these practical applications one must wonder if there is not a trade off between autistic strengths and weaknesses. For example, even if autistics do well on the block design test of the Wechsler they do poorly on the comprehension subtest. This probably reflects a lack of social skills deficit that might be the result of mirror neuron damage. This would certainly impair someone in the workplace who might throw a tantrum or tell the boss to fuck off. This would get them into trouble with peers and social relationships or with teachers and impede the ability to learn in school just as much as Mottron's potential application of the enhanced perceptional abilities could potentially enhance these abilities. Therefore rather than the research of the Mottron group being used to enhance strengths in these settings, the concomitant weakness of the autistic could in actuality produce a zero sum result.

Dr. Mottron and his sidekick Michelle Dawson are now the darlings of the neurodiversity movement for the above stated reasons. This is in spite of the fact that neurodiversity proponents have consistently maligned autism speaks claiming they are deliberately trying to find a test to abort autistic fetuses. They have urged a boycott of Lindt Chocolates and possibly other organizations that help raise money for autism speaks. However, they are not bothered by the fact that their idols are not above accepting half a million dollars from this organization they detest so much. One of the main tenets of neurodiversity is that the brain of the autistic is not damaged or defective just different. They even seem to believe that societal accommodations could solve a lot of autistics problems. However, if Mottron had even a single example of an autistic person who was able to perform as well in school as a typical child, be parented as easily as a typical child or be as competitive in employment as a typical child without curing the brain difference they would be shouting about it from the rooftops. There would be one post after another in the autism hub about it. I have yet to see these posts, ergo, one must conclude that Mottron's work has not yet yielded any practical applications. I am a cynic and will only believe it when I see it.

I emailed autism speaks, asking them why they would award such large funding to a man like this, whose goals are so clearly different from their own expressed goals; A man whose goals I must surmise are very different from people who donate money to AS and participate in their walks, the majority I would suspect have not even heard of the good Dr. Mottron. They only replied that they had a formal review process in which each researcher's proposal was viewed on its merit. One wonders what the merit is of Dr. Mottron's proposals given these statements, but I guess I will have to be mystified. I will also await and see if any of the practical applications Mottron claims his work has will come to fruition. I won't hold my breath too long though.

33 comments:

Stephanie Lynn Keil said...

It's strange that Dr. Mottron didn't refuse to accept this "tainted" money that comes from Autism Speaks. Why doesn't he go to a foundation that better supports his beliefs?

It like someone who opposes all abortion accepting research money from a foundation that promotes access to ALL abortion and actively promotes its cause.

jonathan said...

Hi Stephanie: Those are good questions. I am not sure what Dr. Mottron's answer to those questions is, but I did ask his sidekick Michelle Dawson about it publicly and there are some posts about it in comments sections of old threads of the left brain/right brain blog. I basically asked her since she had said she believed autism speaks wanted a short future for persons on the autism spectrum why she would continue to work with the Mottron group and why she would not resign in protest. Her answer was that basically science and politics were not intertwined. That autism speaks was a credible funding organization in spite of its public face and that it was the responsibility for people who did not agree with AS' position to try to change autism speaks pro cure policies. There is more and I don't remember exactly what I said and she said but that is the gist of it. you might want to do some google searches and you might be able to find those posts or i might try to find them and post them in the comments section. I did not buy Michelle's explainations at all though.

Stephanie Lynn Keil said...

Science and politics are not intertwined?

Anyone with a brain that can use it knows that isn't true. Pretty much everything is political and ESPECIALLY science since it can cause both great harm and great healing.

I would say that in the autism world science is QUITE political, much more so than average...

Roger Kulp said...

Johnathan,I saw this too.I am convinced there is an effort among the neurodiversty movement to infiltrate AS,and remake it into an organization that promotes their agenda.AS is such a high profile organization,with such a big fund raising network,how could they resist ?This just proves it to me.

SM69 said...

The range of projects funded by autism speaks covers various issues of basic science: epigenetic, EEG studies epilepsy, neuropharmacology, environmental causes, language-comprehension, brain imaging etc. In my opinion the scope is very large and much grounded. The Laurent Mottron’s study very unlikely will apply and benefit the rest of the spectrum, however it remains fundamentally important to look at some aspects of intelligence in AS/HFA. Perhaps Autism Speaks is not as black and white as your views of the ASD world are? Interesting that you seem to define yourself from something that you say does not really exist and is inconsistent and flawed, doesn't it make the anti-ND the same? Autism is neither mercury nor no-mercury, neither vaccine nor not-vaccine, neither genetic nor just environment, autism has a bit of everything, and many scientific specialties can add to the overall knowledge and move the issues forward. I think Autism Speaks funding choices reflect this accurately and in this sense it is a good and valuable platform to meaningful research. Too bad I missed the deadline to apply…

A side note: people apply to funding where they can get money. Full stop. Especially if their research remains independent from the funding bodies. Try to get funding and you'll see why that is.

jonathan said...

Hi Stephanie, I agree with you. The person you should be taking this up with is Michelle Dawson. You might want to consider emailing her or writing a comment to this effect on her blog or on her TMOB comment board.

jonathan said...

Lorene: An autistic brain is damaged, it is diseased and defective, it is not merely "different" Any sane rational person who has a relative on the autistic spectrum or who is on the spectrum themselves can certainly attest to that. I can't help thinking there are some sane/rational scientists out there who have applied for limited funding dollars and were turned down by AS and other public and private sector organizations. I have to wonder why Dr. Mottron gets half a million dollars if there is any chance that people who have a sane and rational approach to autism are being turned down. AS states their goal is curation. They advertise their fund raising drives as raising money to help find a cure for these damaged and defective brains or ways to prevent newborn children's brains from becoming damaged and defective The issue is in fact that black and white. There is certainly no grey area there. So I have to wonder in light of these circumstances why Dr. Mottron gets half a million dollars when some possibly sane and rational scientists are being left out of the loop.

Stephanie Lynn Keil said...

Autism used to be quite black and white: either you had it or you didn't. Of course the causes were still unknown as well as the best treatment but there was no debate about who had autism and who didn't.

Now, everyone who doesn't like to talk about the weather and has a hobby seems to be on "the spectrum." Or it is diagnosed after 5 minutes in a child that they can't really figure out. Autism is being completely rewritten since it is now so "diverse" and if a person thinks they are on "the spectrum" but doesn't seem to fit they will rewrite the entire definition of autism to suit themselves. Articles are being written by people using FC that completely contradicts autism and research dollars are being spent on claims that are unable to even be proven came from the autistic person. Long held solid scientific theories about autism are now being disputed by those on "the spectrum" who feel the need to rewrite autism.

I sill fit the original Kanner description, as does my cousin, as do all autistic people whose diagnosis is undisputed. Autism itself is black and white, or at least it used to be.

"Asperger's" as we know it today is nothing like Lorna Wing's description of AS in the early 80's or Hans Asperger's descriptions. Now anyone can take an "Aspie Quiz" and it is almost guaranteed they will score in the "Aspie" range.

I long for the days when autism was just autism...

Anonymous said...

Stephanie, your sure spending a lot of words on telling everyone your autistic. Also, didn't you write that you didn't understand politics, that in fact you have AS, not AD? But your most recent diagnosis is personality disorder? You wrote that. You said that you no longer are considered autistic but now your new diagnosis is personality disorder.

SM69 said...

We have to appreciate as we gain knowledge, nuances and grays start to appear. It was not possible to have the same level of understanding and appreciation of autism in 1943. I was reading again tonight a quote from Kanner “The child with Autism will never reciprocate”, clearly not what is seen today, right?. Would the medical issues seen in ASD have been picked up then? Not as much, but here again, even though Kanner did report gatsro-intestinal abnormalities. But realistically, at that time, one could only identify and group individuals that shared the same “gross” or main presentations (hence a black and white definition). The notion of spectrum became much more apparent as we started to define autism. And in that respect, autism is much more consistent with the notion of differences of being than with the notion of disease. I very much disagree with Jonathan on this of course. If you suffer from hepatitis, or have a problem with of your appendicitis for example, well you either have it or you don’t. Autism is different, like intelligence, perception, creativity, etc, it’s all about spectrum, from being highly divergent from the norm, to being very close to it. Divergence might mean total dysfunction and dependency, isolation etc, or it might mean just being different, preferring to be alone, being asocial, but still able to think coherently. At the other end, one will always argue whether someone is on the spectrum or not. Generally speaking, many ASD/HF people tend to be considered not autistic by some, whilst the ones who say that they are not, but either have a child with autism or evolve in the autism field, are being criticized for being autistic. (An angry man just tried to insult me by telling me I was autistic that is just 10 minutes ago. Hey, funny isn’t it?, only because I pissed him off for being not easily “controllable”).

Stephanie Lynn Keil said...

I don't understand politics; I cannot discuss them. I KNOW what politics are, yes, but I cannot discuss them. There is a difference.

I suppose I could be considered to have AS now by some people as I am high functioning, but my history says otherwise. And yes, I was diagnosed with BPD/PTSD because of a traumatic event; I received therapy for it.

I was diagnosed with BPD/PTSD because of abuse I suffered while living in an institution for people who had no where else to go.

I spent about seven years in hospitals and institutions, finished the 7th grade (spent about a year in high school), earned my GED and then went to college online.

If anyone needs "proof" that I am real they can come to my house, speak with my family and speak with doctors at the medical university where I live. I would prefer to be left alone, though.

And why can't Anon use his/her real name? At least when I discredit people I always use my real name; I'm not afraid of anyone trying to say that I am not real because I have a medical university and my family to prove that I am.

Stephanie Lynn Keil said...

“The child with Autism will never reciprocate”

Some never will.

I am curious as to why some become high functioning and others don't.

Why did I become high-functioning and my cousin didn't?

Is it intelligence? The environment?

How can we start out the same but end up so different?

This is a very curious thing to me.

Anonymous said...

"I was diagnosed with BPD/PTSD because of abuse I suffered while living in an institution for people who had no where else to go."

Thank you Stephanie for being honest. I'm just trying to understand what you write because it's interesting to me. The above quote I want to ask you about. You have written that you are severely autistic. Mr. Doherty has written on his blog about your severe autism. You wrote on your blog that you believe that severely autistic people might be better off in institutions because they like routines and institutions are full of routines. But you just wrote that you suffer from PTSD as a result of your time in an institution, as a severely autistic woman, I don't understand. Why did you write that severely autistic people would be happier living in an institution when that is not what you experienced?

"I spent about seven years in hospitals and institutions, finished the 7th grade (spent about a year in high school), earned my GED and then went to college online."

When you earned your GED and went to college online, were you severely autistic during this time? I assume you were because if you finished 7th grade, that would mean you were at least 11 years old. Assuming you spent the next 7 years in an institution/hospital, that would make you 18 when you got out. You started blogging 2 years later (at the age of 20), according to the age you had on your blog when I saw it last year. Did you go from severely autistic, non verbal (as you wrote on your blog),living in an institution, to high functioning autistic in that 2 year span? I'm sorry for being so forward, I'm just curious because I hear so much about regression at various times in the development of people with autism. I would love to find a cure for my son and I'd like to know what you did to go from a non-verbal autistic at such a late age to a high functioning autistic.

Anonymous said...

Your blog "about me reads"

STEPHANIE LYNN KEIL
I have severe autism with a high IQ. I hope you enjoy!

But you wrote:

"I suppose I could be considered to have AS now by some people as I am high functioning, but my history says otherwise."

Which are you now, severely autistic or Asperger's Syndrome/High Functioning Autistic?

bioengman said...

check laurent mottron website
www.lnc-autisme.umontreal.ca

Stephanie Lynn Keil said...

Severe autism with a high IQ is HFA. I guess you haven't been paying attention or know much about autism...Have you read the book "Severe Autism, Denied Support?" The author has severe, but high functioning autism. I guess I should say "classic autism." Some people believe that high functioning adults, that is, those with a high IQ who are able to communicate, have Asperger's; I believe it is that way in Europe; I have a cousin who is profoundly LFA...

I really can't get into my entire life story in one post, but here is some of it...

I was in two different institutions (something else I've already commented about earlier...)

I haven't written anything about the institutions I've been in. The first one was your typical warehouse I was sent to because I had no place else to go; I was unable to live at home because of my behavior and was sent there; this is the institution I was abused at. I was also always told I was too stupid to graduate from high school and would spend the rest of my life in an institution.

Yes, I used to self-mutilate, live in my own world and etc...I have scars on my body to prove it...

The second institution I went to was much better. I was treated like a human being and yes, I did enjoy it. It was a nice place to live and I think that people with severe autism would enjoy that environement. Now, at home, I do the same thing everyday in the same place...

I never said I was non-verbal; I said I had difficulty talking. I CAN talk, I'm just not very good at it; I PREFER to type.

When I earned my GED at 18 and went to college online at 20, yes, I was still severely autistic...I'm still severely autistic, I just have a high IQ...I have HFA...I've said this many times...I was assumed to be mildy retarded by some in my youth...but later people knew I was smart, I just didn't talk much or express my thoughts...I still don't talk much or express my thoughts verbally; I only talk to people online...

I began to e-mail a former psychiatrist my thoughts at 18/19, something I haven't written much about yet. I then started my blog around 20. At first it was just where I posted artwork and then I started writing posts; they were actually intended for my former psychiatrist to read and whether he did (does) or not, I don't know. He read my e-mail for about six months and then changed his e-mail address (ethical reasons).

I was going to be sent to an institution/group home at 18 but I went to live with my father, which is where I am now.

I live at home with my father. I recieve SSI and Medicaid; I am still on waiting lists for autism services...I mostly sit in my room and do art stuff and type on my laptop...

I wanted to go to college to "prove" I wasn't retarded...

I was told by a neuroscientist that around the age of 17-21 the frontal lobes in people begin to activate and this is why SOME people with autism may have a developmental spurt around this age. I've had other developmental spurts; around 18 I became much more aware of myself and the world...started e-mailing my psychiatrst, went to college online, started my blog...

And I'm not the only one...Droopy and "The Residential Autist" are also two others. Why don't you ask them as well? Roger Kulp also has severe autism (he has no blog though). He says he regressed later in life so if that is what you are interested in you should ask him.

And why don't you use your real name?

Stephanie Lynn Keil said...

Dr. Mottron Research:

- Enhanced visual processing contributes to matrix reasoning in autism
- Enhanced perception in savant syndrome:patterns, structure and creativity
- Mutations in the calcium-related gene IL1RAPL1 are associated with autism
-Are autistic traits autistic?
-Novel de novo SHANK3 mutation in autistic patients.
- Epilepsy in autism is associated with intellectual disability and gender: evidence from a meta-analysis

I'd have to say that half of these are geared towards high functioning people, not those like my cousin, the ones that need it; I mean, you have to have at least SOME studies that actually study something useful in order to get any funding. (like mutations).

I really want to see the results of "Are autistic traits autistic."

That one sounds useful...

SM69 said...

Hi Stephanie

This is a personal question that you might not want to answer, but are there any possibilities that the sort of awakening you are referring to is related to the relationship you have established with your psychiatrist? This is very common for NT people to develop some affection that on surface might look like love, for a therapist or a teacher, and that alone can actually drive development, awakening of the senses, reflection, etc. There might have been hormonal changes taking place as a result or concomitantly and these are also known to be important for brain development as well as cognition.

I have some parents coming with reference to HFA teenagers showing concern about them falling inappropriately in love for someone. Whilst there are risks of becoming disappointed of course, I see this as a very important development for the person. How strong is that motivator?!!! Really strong. Then it’s all about showing how he/she could more easily enter in a relationship, working out the principles of it, with a potential good ending at the end of it. I know it will never be as easy as one would like it to be, but learning is possible and this learning is about self and how to relate to others which is essential for development. Development takes place throughout life time for most people (but not all).

In autism, one should remember there are many instances of regression, at any age, this is documented and we see it over and over, again today. I have several cases that justify of full case report like these. Equally most people on the spectrum will move back and forth along the spectrum of strength and difficulties, depending on health, stress, personal experiences etc. I have seen over and over cases of major improvement, at any age. Usually it is because of an intervention of some kind, but it can also be related to a change of environment, and different relationships being established, and is not always clearly defined in nature. We have to view the brain as being very plastic (up to a level of course), as soon as there are some changes, these will enable a more substantial development to take place, like a spark, enabling the person to acquire yet further skills simply because his/her brain can take more things in, can self-regulate better, can integrate knowledge better. It is exponential.

I believe there are MANY ways individuals with autism can be helped. I am totally confident that most people with autism can function better than they currently are in most instances. And this is exactly why I do the job I do now, to create opportunities to assist people meeting their full potentials. Just as a matter of clarification for Jonathan who might respond, we know who you are (having read Fitzpatrick's book, Ha!), it is not just about Biomed. what can assist ASD people.As as said above, love alone can! Ah!

Stephanie Lynn Keil said...

I am going to write about my relationship with him one day, don't worry, because yes, it definitely helped. I just have to get the wording correct.

SM69 said...

In the UK at the moment, especially in Scotland, but also nation-wide, charity- and Gov- funding will not cover anything that does not have a primary aim to help people with autism. Help for very justifiable reasons and with very justifiable means (well grounded, based on reliable facts and economical). You have to be SBC to get away requesting funding that will serve no one but his unit, and Cambridge University for points earns based on publication. Or you have to be working in genetic, which tends to have no direct application (have DS people benefited from the knowlege they ended up with 3 chromosomes 21 instead of 2?),that is no other benefit than distracting from the row on the issues of environmental causalities of course. In other words, you can not even try to ask to develop knowledge, or methods that may at some point be helpful to ASD people. Nope. And I think this is a very good thing, because the work is much more focused on real results that will make real differences. Life is precious.

But I remain none the less someone who will always be interested by academic questions too, no matter how useless these questions can be, and in that respect I am interested in the Mottron’s work too... though, hell, really?

-Are autistic traits autistic?
No.

Autistic traits are not autistic as they are found in lesser extent in NT people, there is nothing that is specific to autism, it’s just a little more of them. Can you come up with an autistic trait that is unique to autism than no one could have even in minute amounts? Like another appendage? or really superior inteligence (ho! Jonathan you will not like this!- but savant skills are not shared by all Autistics).

Nope, I really don’t think you need a prove this at the highest level, right?

Equally, epilepsy associated with greater cognitive difficulties. Interesting, because I doubt this question will be asked correctly, for the very reason that it is impossible to dissociate epilepsy from its cause which is what can cause mental difficulties. i.e. is epilepsy a cause or a marker of another brain dysfunction which is what is associated with epilepsy and mental difficulties together.

People who have epilepsy and no autism, no brain encephalitis, no immune aberration etc, actually can live pretty normal lives, even with constant fits. What Mottron will almost certainly do to answer that question is to compare ASD populations with and without epilepsy and say, well the one with epilepsy have more difficulties (which we already know is the case), but that will not prove anything for the reasons I have said above. And he will not be looking at non-autistic epileptic vs autistic epileptic as additional comparison, because he already known what he wants his study to find (it is the same with the autistic traits project, he knows what he wants to find, and he will find it, but that will not make his findings correct).

In my opinion, the only way to answer the epilepsy question is in animal models, inducing epilepsy during development and comparing cognitive, social, exploratory, developmental parameters to animals without epilepsy, in a psychometric paradigm that is as closely possible matching an autism animal model.

jonathan said...

The comparison between autism and epilepsy are not valid. Epilepsy can often be treated or at least mitigated with anti-convulsant mediactions. Of course on the extreme end you have severe epilepsy where part of the brain has to be excised the seizures are so bad and those people don't have anywhere near normal existence before and after neurosurgical intervention. The case of HM whose hippocampus was completely removed is one example.

At present I don't believe there are any legitimate treatments or interventions for autism, certainly not medication as the recently RTCs on SSRI medications in autism have shown

Roger Kulp said...

Stephanie,

I'm not sure what SM69 is trying to say in her first post here,but the way I read it,is even though we all agree what autism is,there is no one single cause for it.A point all but the most diehard antivaxers can agree on.

Autism is a little more complex than classic Kanner autism,or autistic disorder VS Asperger's Asperger's original concepts vs what we call Asperger's now,or even HFA vs Asperger's.

Thank you,btw,for giving the best simplified definition of what true HFA is.I was once labeled with that,then my doctors started documenting my regressions.Yes regressions plural.If you mean your nonverbal IQ is a lot higher than your verbal IQ,then you are just like me in this respect.

I have autism which is probably due to mitochondrial disease.In addition to all sorts of serious medical,and developmental problems this caused I have yet another type of autism.There is an excellent handout from Dr.Marvin Natowicz,of The Cleveland Clinic of eight of what he calls "red flags" or signs of mitochondrial autism.I have six. These are not as well publicized as they should be,but rather than post all eight,I will just post a couple of valid highlights.

"1.The autism is not classic and/or the diagnosis is not straightforward when observed by credible specialists.Examples of this are children who may score as autistic or PDD-NOS by DSM-IV criteria because they have language,social and behavioral deficits.However, professionals often say that they have "too much eye contact" or a certain "eye quality" or are "too social" even though their social skills are below expectations for developmental age.Diagnosticians use terms like "atypical autism" or "features of atypical autism," or they may say, it's "not quite autism" but we're not sure what it is either.This is a "squishy" diagnosis.

2.Developmental regression:  Because some 25-33% of autism is regressive in the first year of life, some clinicians discard these kids as unworthy of further scrutiny. 

6.Given the proper educational, behavioral and therapeutic supports, children with autism are capable of learning.When children do not learn (or lose cognitive skills),one may first question whether the child is being taught appropriately.If the answer is “yes” or if the educational piece is corrected and the child still does not make progress,metabolic scrutiny is often appropriate."


Autism is no longer "black and white",and that's a good thing.

SM69 said...

Thanks Roger for sharing this. May I ask how your mitochondrial dysfunction was diagnosed, did you get a muscle biopsy for this? Also, do you know what caused your regressions?

Known events that can be associated with regression are:
Infection
Vaccination
Allergies
General Anesthesia
Certain foods
Epilepsy
Abuse

Known Non-genetic events associated with autistic developmental delay

Gestational: exposure to alcohol, anti-epileptic medication, thalidomide, paraformaldehyde, viral infections.

Peri-natal: Birth trauma, hypoxia, infection.

Post-natal: infections, vaccination, epilepsy, brain injury.

Stephanie Lynn Keil said...

It sounds that your type of autism is much more "medical" than mine. Mine is mostly a neurological problem. I have a higher nonverbal IQ than verbal IQ as well. I'm sure I could qualify for other neurological disorders but I don't see the point in doing that.

I think you use the word "autism" to refer to anything that resembles Autistic Disorder. I think that many things can cause similar symptoms to AD, whether it be medical problems, allergies or whatnot, but than it wouldn't be Autistic Disorder but some other type of medical autism. It's like saying that psychosis resulting from a head trauma is schizophrenia. It resembles schizophrenia, but it isn't.

But I don't think there is much point in separating in what is AD and what isn't in most cases. Treating the symptoms is what is most important.

Roger Kulp said...

One more thing about regressions.They are always triggered by something medical that you can point to.I can say without a doubt that my autism started during or after an acute case of meningitis I had when I was five months old.This means that even if you improve,the next severe infection will cause another regression.I have had several major regressions as an adult triggered by acute infection. the last one in 2007.These take 18 months to two years to recover from.During major regressions,you may also develop new autistic traits,that you did not have before.

Even after you recover from a major regression,every flare of a serious health problem will cause an autistic setback.Which is why vaccines trigger autism in children with mitochondrial disease.It need not be a group of vaccines,it can be any serious shock to the immune system.Autism and bowel disease (Sound familiar?) were the initial presentations for me.I did not complete puberty,in spite of normal hormone levels.About the time I was supposed to hit puberty,my heart, lung,and cytopathic joint pain first showed up.

The connection to autism and mitochondrial disease is nothing new.It is something very old that is just now being recognized. Children always got acute infections in early childhood. Before antibiotics,most died.The focus on autism has always been on very young children.There has been no followup until recently of the longterm health of children with autism,even in the second decade of life.

The Cleveland Clinic study last year specifically mentions the mitochondrial disease in autism is "less severe" (eg nonfatal) than classic mito.

How many adults previously diagnosed with autism have undiagnosed mitochondrial disease?We may never know.There is a lot of work involved in getting a mito diagnosis.

The autism in mitochondrial disease is very real.In spite of the desire of the Kevin Leitches and Ari Ne'emans of this world to sweep it off into another disorder.


And I've had go-rounds with both about just such a topic.

SM69 said...

Thanks Roger, I appreciate very much you sharing this. The regressions you are reporting are very much in line with what we see in 60% of ASD kids (in a group of 400). There are currently no genetic abnormalities that can explain a regression. Some might argue regression is a myth, a misinterpretation made by parents, not being able to appreciate accurately the development of their child, but I really think this is a very poor line of argument. Parents in fact tend to be very accurate and perceptive of their child’s health and development(they ahve been genetcially selected to be excatly that in order to protect their children). Regression like the ones we see or you describe cannot be missed, or misinterpreted. Regression has now become an accepted fact even by the most mainstream autism experts.

Which new autism traits have you seen developing after a regression?

I appreciate talking to you because I normally have parents reporting regression, not the individuals themselves. Most adults with autism I have been in contact with do not have such level of self awareness to appreciate what influence their health and how this in turn can influence the way they think and behave.

Stephanie Lynn Keil said...

Wasn't the Poling case, where the judge determined that autism was caused by vaccines, didn't the girl have a mitochondrial disorder?

Parents often say that their children were normal from birth and then regressed later in life in those with regressive autism.

My parents always said that I was never "normal." I was always different, even from birth.

I don't have regressive autism but Autistic Disorder, as described by Kanner.

I wonder if people with regressive autism and Kanner's autism have different symptoms? An "autism" label will be slapped on anyone when they display anything resembling autistic disorder even if it isn't truly autistic disorder. I've only gotten better as I've gotten older since Autistic Disorder is a developmental disorder. People with regressive autism usually remain quite severe or have periods of relative stability until an illness and then regress. That would seem like a different disorder than from the one I have even if the display of symptoms are similar.

JediKnight2 said...

Hey Roger, Stephanie and Jake,

I would be interested to talk to you online.

Jonathan, please feel free to give them my email address privately if they want to talk.

bstp said...

<< It would certainly appear that Dr. Mottron does not believe that autism is a global health crisis, that autism is not a disorder disease or possibly even disability but merely "a difference". >>

To a person crusading against neurodiversity, it may appear so. To a person thinking in logical terms, it does not look like that. Hypothesizing that autism is at least a cognitive difference does not entail that it can't be a disorder disease. In any case, if it's a disorder disease, it sure is a difference, no ? So the first hypothesis is way more conservative than the other. That we don't know what kind of disorder disease ausism is still the fact that matters.

This is what Laurent Mottron tells when he's speaking to the public. I don't know why we should tell the public that autism is a disease disorder, when this has no scientific consensus. Every scientist in the field would love to solve the problems autism cause, be they differences or disorder diseases.

What we need is valid research. Laurent Mottron puts up very interesting and important researches, as far as everybody knows. He even goes as far as contradicting Baron-Cohen, allegedly a fellow neurodiversionist, just to show how unbiased a scientist can be. So whatever he personally believes on the subject is of no relevance whatsoever, if we are concerned about solving the problems surrounding autism.

Let's not drown ourselves into semantics, shall we?

jonathan said...

If anyone is trying to obsfucate the truth with semantics it is you. Mottron has clearly stated if wired is not misquoting him that he believes autism is not a disease and only a difference. He has accepted nearly half a million dollars from an organization whose goal he says is nonsensical.

Have you read his paper, autism common, heritable but not harmful? He is clearly saying autism is not harmful basing this on a very limited pool of research subjects. He has posthumously diagnosed nicholas tesla, a historical figure whom he has never met who died well before he was born. This does not seem like an ethical doctor to me.

I don't know how doctors are certified in France or in Canada where you apparently come from but here in the united states, doctors are required to take a hippocratic oath in order to practice medicine that says they will do no harm. Dr. Mottron fails miserably in this regard. I have autism, it has made me suffer I know that it is a disease and a disability and that it is harmful. I wonder if Dr. Mottron would care to go to the mother of Ashley Brock or any of the other children who drowned or who died due to their autism and look them in the eye and tell them that the disability that killed their child is not harmful.

bstp said...

<<

Mottron has clearly stated if wired is not misquoting him that he believes autism is not a disease and only a difference. He has accepted nearly half a million dollars from an organization whose goal he says is nonsensical.

>>

Could you provide a direct quote of this? I doubt it, since the inference is plainly not valid. One can believe that autism is a cognitive difference without believing whether is autism is a disease or not. In fact, we don't have to say it's a disease to try to solve autism's problems.

The paper you refer to was only a peer commentary (where Mottron was the third author) to a target article, which presupposed that autism was harmful, but from an evolutionist point of view only. Here is their counter argument :

<<

However, whereas K&M assert that Darwinian psychiatrists and evolutionary psychologists “often go to torturous lengths to find hidden adaptive benefits” (sect. 1.1, para. 3), we assert that cognitive scientists often go to torturous lengths to occlude obvious adaptive benefits.

The empirical literature is replete with demonstrations of autistics’ superiority in numerous perceptual, reasoning, and comprehension tasks: Across a wide range of age and measured intelligence, autistics perform significantly better than non-autistics on block design, a prominent subtest of Wechsler-type scales (Shah & Frith 1993); on embedded figures tests, which require rapid visual identification of a target figure amid a complex background (Shah & Frith 1983); on recognition memory (Toichi et al. 2002); and on sentence comprehension (Just et al. 2004); and autistics are more impervious than are non-autistics to memory distortions (Beversdorf et al. 2000) and misleading prior context (Ropar & Mitchell 2002). Such superiorities are not isolated phenomena; some theorists argue that such superiorities abound in autism (Mottron et al. 2006).

>>

I wonder if you are referring to this list of references when you're talking about a very limited pool of research.

I would also welcome a quote of Mottron's diagnosis of Tesla. I thought this passage was simply for the sake of illustration.

<<

I have autism, it has made me suffer I know that it is a disease and a disability and that it is harmful.

>>

No doubt that autism makes you suffer a lot. That could be because it is a disease. That could also be because some aspects of it provide problems coping with the actual society of men. The fact that it is considered a disease is simply of no bearing upon your suffering. Most handicaps cause suffering too. And some virtues too, for that matter.

Saying that Mottron is against AS because his collegues and himself question the evolutive harmfulness of autism, based on an interpretation of that as general harmfulness, is misguided, to say the least. Your comment relating to where I come from is dubious at best. It seems to me that the problems of autism have more chances to be solved if we study it rationally enough so we keep away from the ways you build up your requisitory.

jonathan said...

I provided the direct quote in the body of my blog post. Though Gernsbacher, Dawson and Mottron were responding to an article that talked about evolution, they were in general talking about autism as a whole not being harmful. By limited research subject pool, I mean that the research subjects that Mottron and company use are certainly not drawn from the general population of autistics, but are disproportiionately male, 7:1-12:1 ratio in his subjects as opposed to 4:1 ratio in the general population of autistics. Also, they are high functioning autistics with largely normal or higher than average intelligence, so the limitations of the research should be acknowledged.

Mottron's posthumous diagnosis of Tesla was also in the body of the common, heritable but not harmful article that you yourself quoted from.

Both your link which gives your web page and your IP address indicate you are from Montreal in Quebec, so maybe you are not familiar with the fact that American doctors are taught to do no harm and take a hippocratic oath to that effect. If doctors in France and Quebec are required to take such an oath, Dr. Mottron has certainly violated his.

bstp said...

I found a source of the quote in your blog entry here :

http://www.cbc.ca/national/blog/special_feature/positively_autistic/interview_with_dr_laurent_mott_1.html

In this interview, Mottron explicitely says what autism is for him :

<<

Q. DR MOTTRON, CAN YOU TELL ME WHAT AUTISM IS? IS IT AN ILLNESS OR DISEASE?

LM: The main thing is that nobody knows what it is. We know that a society decided to call it autism. So, autism is a definition currently. It is a DSMIV. It groups certain numbers of people who have in common, who share, atypicalities at the social level, at the communication level, and in the variety of interests. So they may be in some ways quite different, but they all share these peculiarities.

Autism is currently included in psychiatric diseases. This is a sociological fact. It doesn’t mean that it is psychiatric. It means that it is incorporated in psychiatric books which list all the variations of typical development, for example.

>>

And here what Mottron thinks about autism being considered a disorder :

<<

Q. CURRENTLY, PSYCHIATRISTS IDENTIFY AUTISM AS A MENTAL DISORDER, WHICH ESSENTIALLY POSITIONS AUTISM AS SOMETHING DEVIANT AND ABNORMAL. DO YOU AGREE THAT IT IS A MENTAL DISORDER AND THAT PSYCHIATRISTS SHOULD VIEW IT THIS WAY OR DO YOU HAVE AN ALTERNATIVE CONCEPT OF HOW AUTISM SHOULD BE VIEWED?

LM: The way we interpret and qualify autism in terms of adaptation to the standard world is an extremely complex issue in the sense that we have to take examples from other conditions than autism. Let’s go back for example to deafness. A deaf person is completely different for his or her adaptation according to his or her access to sign language. So you may have somebody who is considered who has a disease, who has a handicap, which result in a handicap, then this handicap has a huge effect on adaptation. If the person is not able to communicate, or lesser effect if she’s able to communicate. So, if we take this analogy for autism, the way we consider it as a disease or not depends what we call a disease.
If disease is considered as a defect with only negative consequences, clearly it’s more complex than that. What can be, what is obvious, is that you have less people who are autistic than people who are non-autistic, so it’s a variation in the typical development of human beings, but because this condition is not homogeneous you have people who have this condition of autism who show increased abilities in a certain number of domains, which is quite unusual for something that you would call a disease.

>>

I still wonder how you can think that these positions, now explicitely stated and not only inferred, goes against AS' mission.

* * *

As an aside, it would be interesting to see how you build up an argument to the effect that Mottron has violated his oath. This would provide some insight about the certainty of your judgement. But it would be for another time.