Thursday, July 16, 2009

Autism Cure Research Underway? Or Have We Given Up?

Parents of autistic children have searched for effective treatment, and preferably a cure, for their autistic children for many years. To date only Applied Behavior Analysis, ABA, enjoys strong evidential support as an intervention that can help autistic children learn skills, improve their ability to communicate and reduce problem behaviors. But, as a strong supporter of ABA intervention for autistic children I do not suggest that it is a cure.

Possible cures and treatments, such as HBOT, stem cell and chelation do not enjoy any substantial evidential support as treatments for autism disorders and can involve risk to the autistic person undergoing treatment. But what studies, if any, are currently underway exploring possible treatments or cures for autism? A planned chelation study was abandoned on the basis of risk to child participants in the study.

Do we really need to spend charitable and tax dollars to finance the latest Mottron-Dawson group study promoting the ability of a small group of High Functioning Autistic persons to out perform a small group of non-autistic persons on one specific test? As a parent I am constantly amazed at some of the things my autistic son can learn and do on his own but his overall understanding of language and the world and his ability to function in it are limited. Do we really need to fund studies to tell us that parents of autistic children suffer additional stress levels from the extra child raising challenges presented by raising autistic children? Do we need yet another genetic study to tell us that there is a strong genetic basis to autism while ignoring possible environmental factors?

As the parent of a 13 year old boy with Autistic Disorder, assessed with profound developmental delays, a boy who stims but does not produce choreographed Internet videos about stimming and "autistic" language, I would like to see research done that might have some actual value to my son. It would be nice to see research that actually helps the intellectual functioning, the understanding of the world, ability to function in the world, of those autistic persons who do not appear before the Supreme Court of Canada, the Canadian Senate or CBC and CNN cameras.

It is long past time that research money was spent on ways to help autistic persons overcome their deficits. If we study genetics we will find genetic bases for autism. If we study problem solving abilities of High Functioning Autistic persons we will learn more about the the abilities of HFA persons.

If we fail to study causes of, and look for cures for, autism then no cure will be found. And those who claim that "the notion of curing autism is nonsensical" will win by default and our autistic children will lose.




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14 comments:

navywifeandmom said...

No kidding.

What *I* don't understand is why don't they study autistic children who respond to certain therapies and see WHY they respond.

Many parents have travelled to places such as Costa Rica for expensive stem cell therapy to have it do absolutely nothing. But then there are cases where it does seem to help a child that cannot be explained. Why the lack of medical curiosity? Why not study the children who DO respond and see WHY they respond? How is their physical makeup different than all the other children who did not respond?

Same with the HBOT study that was done earlier this year. What is different about the makeup of the 1 in 3 individuals who did have a positive response to HBOT versus the 2 out of 3 who did not?

This can be applied to other autism interventions, both conventional and unorthodox. Why do some children respond to chelation? Why do some children respond to ABA whereas it does not work for other children?

Why are they not taking this approach to research? They are trying to paint all these kids with a broad brush when they do these genetic studies and it just cannot be done.

We plan to start a trial of oral chelation later this year. I have researched it, I am not afraid of it for our particular case, but I can understand why some parents would not even want to go there or would want more proof that it will help their child before trying it. I was dismayed to see them cancel that particular study, actually. We are also going to do a trial of HBOT next month. I was not even going to look into that one until that study came out but now I am going to give it a trial, especially since the responders in the study tended to be older children (my daughter is six).

My biggest reason for doing biomed is that my daughter is pretty severely affected and cannot wait for all the political crap surrounding autism to be hacked through. That could take 20 to 30 years and she could be an adult before some of this stuff is settled. I can understand, like I said, why parents do not want to try treatments considered unproven. There are some that are not on my list of things to look into simply because of the expense. Stem cell therapy in Costa Rica is not on my list, for one, because of the cost. Spending 15 thousand dollars on something that may do absolutely nothing - well, that's quite a bit of money to throw away. However if they would study the children who respond, find out why, and I was able to determine that my daughter meets the criteria of someone who may respond, then I would be more willing to consider stem cell therapy.

And why, oh why, do the scientifically proven interventions such as ABA not get covered by insurance? Why do the ND ideologues bash ABA the same way they bash the "unproven" biomed treatments? They don't have a leg to stand on when they claim there is no science behind ABA.

The more time I spend on different ND blogs the more disgusted I get. They don't want to help autistic children, they just want to bash parents and researchers every chance they get.

The politics of autism research make me so angry. The clock is ticking towards these children's adulthoods every day. Every research dollar spent studying how stressed we parents are or how dads of autistic children prefer flat-chested women is money down the drain. This is not a game, these are people's lives and futures they are fooling around with.

Dave in Richmond said...

Amen my brother.

farmwifetwo said...

(said in a sarcastic tone of voice)Geez Harold why would they ever want to do that for?? Why would the ND crowd ever sanction it?? Wouldn't that be curing?? Wouldn't figuring what genes are causing the damage - whether inherited or environmental - lead to eugenics and therefore we shouldn't learn anything about Autism and maybe CURE it one day?? Wouldn't that allow for a LFA person to become a HFA person and tell those that are currently HFA to get a life and that autism isn't a cutsie little club to belong to?? That those LFA who would now be HFA and able to tell people that they didn't like being LFA and at the mercy of others in their world since they couldn't function in it on their own and NO they would not like to go back to being LFA.....

Decent research, research on meds, on stemcells, on genes.....

This "autism is glorious, your children should be priveledged to be autistic but don't ever make them self-sufficient members of society b/c that's reserved for us who can have jobs, sex, families, children, etc of the ND crowd and we know better than you do...."

Needs to be stopped.

Autism is not a difference it is a DISABILITY. Which is why I still to this day have not told the elder he is "different"... Why should I?? By Gr 8 the dx is GOING..... It's not an excuse for bad social/behavioural skills of those that don't have language/speaking/executive functioning etc issues... social and behavioural can be taught and are being taught in my home. ANYONE who does not have a disability, that can function normally in society, that can have a job, family, children... IS NOT AUTISTIC... And I HOPE, I HOPE, in the DSM V they are removed from the spectrum and it is reserved for those that have a DISABILITY.

Little boy has a DISABILITY. To call it a DIFFERENCE means that ODSP and the other disability supports given out my gov't won't be necessary will they???

UGH!!!

Stepping away from the soap box.... Been reading too many posts over at Jonathon's blog lately.... Then Michelle posts about the wonderful essay....

Back to my corner of the world...

Foresam said...

Harold,
The chelation study that they dropped was designed to fail. The only thing that can take mercury out of the brain is ALA and that study was not going to use it.

I think it was more a case of being afraid that some kids might improve anyhow rather than being scared that some would be harmed. Since no person has ever been harmed by chelation (aside from malpractice) they just used the harm possibility as an excuse.

Claire said...

Thanks for the info Foresam...I was wondering about that "harm" business when it came to chelation. I don't get the whole fear of biomed to begin with...food and supplements. About as basic as it gets. What's there to be afraid of, except, of course, success.

Karen Freeman said...

With all due respect, from one parent of an asd child to another, I disagree with your statement that paints all these therapies (such as hbot) as ones that do not work for all kids. I have many parents who I have spoken to who have used hbot and found it helps their child. Information on these parents can be found on our blog: www.jacobfreeman.blogspot.com

There is also a study being done at the University of Connecticut where they are following children who have 'recovered' from autism.

I read your blog very often and wish the best for you, your son, and your family.

Autism Reality NB said...

Karen I did not say that these therapies do not work. I said they don't have much evidence of their effectiveness. I am not at all opposed to properly conducted studies of possible autism treatments and cures.

Anecdotal evidence exists for EVERY treatment and cure for every condition. Such evidence does not carry great weight compared to various types of planned studies which are generally given much greater weight in assessing the evidence of a treatment for a condition.

I am actually arguing that we should have more studies and more research to find, and demonstrate, the effectiveness of autism treatments.

navywifeandmom said...

"Wouldn't that allow for a LFA person to become a HFA person and tell those that are currently HFA to get a life and that autism isn't a cutsie little club to belong to??"

Farmwife, that is a freakin' DREAM of mine! That one day my daughter will be able to tell these people to shut up, that they do not speak for her and never did.

Yesterday I met a woman at my daughter's school who has a teenage neice who has LFA. I told her that if she gets on the Internet, she will find that there are people who think it should not be cured. She was totally shocked. She had never in her life heard of neurodiversity.

I cannot think of ONE PERSON I have met IRL who has someone with autism in their lives who thinks it is anything other than a disability. Most have never heard of ND.

Roger Kulp said...

Clinic raided by feds
http://tinyurl.com/lpkcqy

Neurodiversity cheers
http://leftbrainrightbrain.co.uk/?p=2586

Roger Kulp said...

Don't forget biomed is expensive. Why do you think Jenny McCarthy has all those "scholarships"?I was somewhat surprised when I learned there are people who buy their own HBOT tanks.What do those things cost anyway,$10,000 or $15,000 or something like that ?

I would be very interested in knowing just how many DAN! doctors treat poor or indigent families?Or are they stuck going to see mainstream doctors who only know SSRIs,and antipsychotics ?Sometimes a family is very lucky if they can afford the supplements alone,and not the doctor.

As for research,I think we are just starting to see the start of a real war in the world of autism research,with people like Harvard University on one side,and Paul Offit and Laurent Mottron on the other.I hope everyone here saw the video of Dr.Tim Buie at the 2009 Maine CDC Conference,where he comes out and says HBOT has benefits for autism.In the same video he supports Andrew Wakefield, just not that study.

Foresam said...

I read something from Andy Cutler recently where he discussed figures about how many people had success using chelation. He didn't have a definitive answer but some of the problems in assessing it were people who quit too soon and people who had success and then would not bother with autism anymore.

If someone wanted to do a study, the Autism Mercury group would be the place to find answers rather than leaving it up to the government. The problem would be contacting everyone who used the protocol but doesn't follow the group messages now. At least you'd know that the study wasn't being rigged by avoiding the use of ALA.

A Family said...

I agree with Navywifeandmom and this post, but I am willing to spend the money I don't have for the chance that my child will respond positively. And he has.

Someday, the medical community will realize there are X amount of kinds of autism and this or that therapy helps this or that kind of autism. There is something different in different kids causing autism. But like you say, there is no time to waste. So in the meantime, I try everything, and I am watching my son recover daily before my eyes.

Marius Filip said...

Another instance of stupid science related to autism is the study concerning autistic laughter that Ms. Dawson speaks about with so much respect ...

I have 100% agreement with the last statement of yours. If we don't look for a cure, we won't find any.

coc said...

I agree with Roger, Biomed can be ferociously expensive, especially when you get to the later stages of DAN!, chelation and HBOT. The food and supplements elements are largeley common sense (Doritos and Skittles make my child hyper - whodathunkit?) but the protocol does lead inexorably to HBOT and chelation, for which there is little more than anecdotal evidence.

Ideally, with infinite resources we would study every possibility but sometimes there needs to be prioritisation of areas most likely to yield real evidence based solutions. I'd rather my taxes went on paying for genetic research than on chelation trials, but if Bill Gates wants to throw a couple of hundred million at chelation, who am I to carp? If we find that it really works (even on only a known subset of children) well that would be a couple of hundred million well spent. If (as is more likely IMHO) the study finds no benefits to chelation, well then that'll be skin off Bills nose, not mine. :-)