New article about Baclofen as a treatment for autism

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Hardly responsible either. I'm not sure who is and isn't aware of this, but the autism community is full of parents fully willing to test new meds on their children (often several at a time, with potential interactions) based entirely on one parent thinking it might have helped someone. A lot of people identify with the parents here, but I identify with the autistic person most easily, and I think of the hundreds if not thousands of autistic children on meds they don't need like guinea pigs because of this exact kind of irresponsibility. I grew up on a lot of meds I don't need, my neurology gave me highly unusual reactions to them, and I don't want to see that happen to anyone else. I also remember the pressure (even unwitting pressure) to try to behave as if every new drug would help me. So I tried then I would fall apart again then the whole thing would repeat with some new drug. Not good.

OK, Ottery, let's test your sincerity.

What do you know about atypical reactions to psychotropic medications among autistics (this would include Baclofen)? Do a little research along that axis and you will understand the skepticism.

Drop the rhetoric of 'scientific break through' and the emotional reaction such phrasing deliberately invokes. If you want a serious discussion of autism, there are many here that can give it to you, including citations to academic journals, references to the latest in brain imaging, therapies and interventions, and pretty much anything else you want to talk about. There are some here that are lawyers (go figure, autistics CAN pass the bar). Some cog-sci professionals. I think even a few neuro-biology professionals.

I suspect that your agenda has narrowed your focus so much that you can't see other points of view. Not a very tenable position, and one likely to miss knowledge that will be helpful to your wife.

Hello

1. I don't know anything about reactions to medications.

2. I believe the work done by Seaside Therapeutics with Baclofen and Arbaclofen is a breakthrough and I believe time will prove me right. I would now have posted if I did not believe that. I am not trying to be clever by suggesting it. I have taken Baclofen for a year now and have read Olivier Ameisen's book and done a lot of research on Baclofen in relation to alcoholism.

3. I believe that the underlying mechanism in addictive craving is the same as in many autistic type illnesses. This only occurred to me when I read the Time article which has now been posted on other Autism and addictions sites (not by me).

4. I came to this site purely because I googled the article and autism and found reference to it here.

5. I could have been more pleasant in my posts. I did not come here to lodge my self up anyone's nose. Equally, being pleasant would not have got the message across any more effectively and people here seem to be able to give as good as they get. I don't think anyone lost any sleep over it.

6. I do take things very seriously given the situation I am in. I m passionate about Baclofen research because I know it works incredibly well for alcoholism and if it or Arbaclofen work any where near as well for other disorders as then there may be interesting times ahead. If it does not work then nothing has been lost. The drug is non addictive and safe and easy to withdraw from.

7. Yes, maybe I have autistic tendancies.

It is plainly too early to expect anyone to post here with their experiences with the use of Baclofen for autism and from the study it seems that it is not as effective as the new version of it. I don't know how effective it would be but it has helped me with a wide range of problems I have had over the past several years from leg spasm, incessant coughing which I had since the 1980's, an embarrassing nervous twitch, unreadable handrwriting, errant thoughts, depression, anxiety and anger... all of which were making my life pretty much a misery. So, even if that is not autism, I recommend using Baclofen if you have these conditions. I know that doctors use it themselves for stress. It is a very widely used and useful tool.

The point about the article is that only half of it was posted. Yes, one person having a good reaction for autism is not enough but the article went on to say that this one incident resulted in the setting up of Seaside Therapeutics and the discovery of Arbaclofen and its successful trial on autism and Fragile X. Of course, at this point it is too early to know what is going to happen. Maybe you cannot call it a cure but I don't believe in engaging in semantics. What interests me is what is at the heart of these disorders because I am concerned that alcholism has at its root, something other than just a moral judgemental issue. The article suggests that there is something very fundamentally different about the brain of someone who is either autistic or addicted. Yes, it spreads hope... maybe false but maybe not. I don't think it is false but I think it is impossible to say for sure now and would welcome any comments about the article from anyone who has used Baclofen.

Over the weekend, reading up on autism I have come to a better understanding of my wife's condition... and my own problems. I suppose I was a bit over excited because, if the science behind arbaclofen is right, this is potentially a very important thing and may help addicts as well as those with autism. I for one would like to see people stop labelling each other and concentrate on finding out what is the cause of human behaviour such as addiction and austism and find answers to them. I think that is the way the study of these illnesses is heading.

Maybe you think I am crazy. In the 1980's I read a book about Shakespeare and started going around obsessively telling anyone who would listen that Shakespeare was a fraud and that all his plays were written by the lover of Queen Elizabeth I. People thought I was crazy but as far as I was concerned I understood Shakespeare's plays better than all the English professors in the world because I KNEW who really wrote them. I kept saying, some day they will make a movie. Well, it's being released in September so who's crazy now!

http://www.firstshowing.net/2010/02/25/ ... akespeare/

I just wish I had been a film maker.

Strange things happen and sometimes it takes a while for people to believe that maybe the whole world might just have got it wrong. That is what invention and discovery is about.

Oh, and I will do some lurking. I am interested now. Coincidentally, my brother teaches in a school for children with Asperger's syndrome so maybe it will give us something to talk about. And I have never had any view that people with Autism cannot be intelligent. Indeed it seems to be a condition that is often associated with over achievement in a lot of people.

Best wishes

Then you need to learn about it if you really have any sincere desire to be well informed about autism. Some autistics have very strange reactions to drugs. My 6 month dalliance with cannabis some 30 years ago was more consistent with what users of LSD describe. THC is not known for hallucinogenic properties. And yet I had intense hallucinations.



As a lawyer you should recognize the weakness of your evidence. You cite a single article and personal experience. I believe this would be equivalent to hearsay in a legal environment. What you bring up is not a breakthrough, but another piece to the puzzle. It is something that prompts further questions and investigation. GOOD science allows those additional questions and investigations to proceed without jumping to conclusions.



Again, an intriguing hypothesis, but not a fundamental shift. How does addiction neurology and etiology square with the latest in brain imaging and structural anomalies being found in autistics? Autistics are showing anomalies in neuron connectivity, connectivity between brain regions, ratios of white matter to ray matter and neuron densities. Can you show any studies linking addiction to these same neuro-biological differences?




And you ran into a buzz saw of skepticism. No surprise. Hang around awhile and participate and you will come to understand what motivates that..



I didn't lose sleep. If you have limited experience with Aperger's you are probably not fully cognizant of the fact that Aspies are well known for being brutally direct. In this forum, at least, there is less motivation to attenuate that directness since it takes conscious effort to do so and it tolerated.




Passion is on full display around this place. Aspies are VERY intense.

I must disagree with the statement that if it does not work then nothing is lost. For some on the spectrum,. psychoactive drugs can have cause very strong side affects. It's not as simple as trying it on for size and putting it back in the bin if it doesn't fit.



It crossed my mind. It is not uncommon that autistic traits show up in highly gifted people. You are definitely not a dummy.



I have to think that you might be an statistical outlier in your experience with Baclofen. It is rare that a drug could have such a broad effect on so many issues. This is another reason for the intense skepticism you have run into. ANYTHING that gets posted that promises benefits across such a wide range of deficits sounds like snake oil. That it has such a profound positive affect on you, is remarkable, but it may say more about your brain chemistry than that of a larger population.



It is not semantics to maintain the distinction between treatment of symptoms and a cure. A CURE means that no further treatment is necessary - that the underlying mechanism is no longer present. Baclofen seems to be a candidate for treating symptoms in a subset of autistics. Calling that a cure is overstating the cae.



I think this is born out in other studies as well. There is a combination of neurology, psychology and personal character in addiction. As addict CAN recognize the problems created by their neurobiology and with helo and support CHOOSE to deal with it, just as an Aspie can CHOOSE to modify the more irritating aspects ot the condition.



Without hope we have nothing.



Hmmm. Maybe you do have some Aspergian traits.




This is something of an inaccurate stereotype. But as you investigate autism further, you will figure that out. There is a very wide range of abilities and disabilities among those on the spectrum



Cheers.

Atypical reactions to neuroleptics are very common among autistics. If you don't know about that phenomenon, I'm going to assume you haven't studied autism and psych meds very thoroughly...

The article gives basically no information about whether this would actually be a useful anti-anxiety drug. (That's right--anti-anxiety. Not anti-autism.) The only study they mentioned was neither placebo-controlled nor double-blind, which means it is extremely preliminary and cannot be taken as evidence of anything more than "This is/is not worth further study"... and maybe not even that.

Having another useful anti-anxiety medication for autistics wouldn't be a horrible thing; but "breakthrough"? No. Even if this drug works reliably the way they say it worked for this one person, it would simply be yet another possible option for autistics struggling with anxiety disorders--not something to dismiss, but also not something to really get excited about either.

Well, just read this if you don't think Baclofen is something to take seriously:

http://blogs.forbes.com/carolinehoward/ ... nnelforbes

And then read this if you don't think there is an underlying connection:

http://www.donnawilliams.net/autismaddiction.0.html

I am not a scientist of course.

I am going to leave this debate. I am making more of an educated prediction based on two years of reading everything I could find about Baclofen and using it/seeing it used on others and posting on Baclofen forums. I sent an email to our psychiatrist with a copy of the article. He said it was fascinating and he is the editor of the Oxford Journal of Alcohol and Alcoholism. I hear what you are saying but Baclofen therapy is growing by word of mouth and it has taken over some pretty big forums. Our other doctor treats terminal liver patients and he used the word magic to describe how it has stopped patients from drinking. The mechanism behind its actions is very different from any other drug. It is unique. A Nobel Laureate in Medicine. Jean Dessault described it as a cure for all addiction. Dr Fred Levin in Chicago will happily speak to you about it and says it is a very important drug and is aware of its use with autism.

It seems to me that people here are pretty astute about medications. Baclofen was developed a long time ago and not used for either addiction or autism until recently. Its effect on alcoholics was discovered in the 1970s. It needs refinement which is what Seaside have done.

Its use in alcoholism is being propelled by the sheer misery of those using it and their need to find some treatment regardless of the side effects. So maybe Baclofen in its present form will not catch on because of its side effects. I have read that it can cause spasms in children so maybe the side effects are worse than the autism. I have no idea. I suppose that is why they developed Arbaclofen.

We are using it successfully and it can be discontinued if you don't mind your symptoms returning.

I think it is a breakthrough. Call that a prediction if you want.

I found this to be highly amusing and it even made me giggle. I have Aspergers and I am on baclofen for muscle spasticity. Since I've been on it I have seen no improvement in any of my Asperger issues ( I have no idea how to word that lol) I say we leave this to the real doctors and please dont tell ppl to take any medication unless thier doctors tell them to.... even tho there are very smart ppl here there probably are some ppl that would probably go out and over dose on baclofen just because they thought it helped someone else... just saying...

Here is the latest on trials and release of the Gaba b agonist: http://www.roche.com/media/media_releas ... -06-19.htm

Best wishes

Baclofen is a very safe medication and no one has died from overdosing on it. It is not hallucinogenic. It makes you feel relaxed. I just posted the latest on the development of this drug as a treatment for autism and fragile x syndrome. I am not saying that anyone should take this medication without consulting a doctor. The article itself about baclofen is about a doctor prescribing baclofen, not self prescribing. The issue with baclofen is that it is very much a dose dependent drug and it needed modification and development because it has unpleasant side effects. The kind of dose one needs to deal with limbic anxiety disorders is sometimes very high. The research involves taking the right side of the baclofen molecule and making Arbaclofen. It is the left side which has the nasty side effects. Roche have now joined in this research and people are now taking it.

If this is a pharmaceutical response to autism and fragile x, it is very important. If I could, I wouldn't just be speaking to my doctor, I would be buying shares in Roche and Seaside.

I doubt it. You can't "treat" a different brain structure. That's why most of the NT world doesn't get. Our brains aren't suffering from an augmentable condition. They're wired differently.

It would be like saying "Why don't you use a new oil or gasoline" on a car to make the engine change from a W8 (rare) to a V8 (very common). Sure, they're both engines, and sure they run on the same fuel, but they're built completely different, so nothing you give to it will change it. And, putting the same fuel through it will give a slightly different output, always.

I am no expert on autism and I am not a doctor. The considerable amount of research on the use of baclofen over the past few years has focused on the amygdala. This is a part of the brain which is like some sort of central processing unit in that it receives all neurological signals from all parts of the brain and all our senses, interprets them and sends out appropriate responses. If it isn't working properly then one gets a sense of dysphoria of varying degree and intensity.

Much of the feelings people have which are described as anxiety related have to do with deregulation of this part of the brain and it seems to respond, or calm down when treated with baclofen and arbaclofen. My experience with the drug, in someone I know who was diagnosed with "organic personality change" from a stroke, is that it changed their "personality" back to being normal, ie, what it was before the stroke. It has taken three years and high doses as well as other meds but it has been an incredible journey.

The way baclofen works is it calms this part of the brain and allows cognitive processes to take place with less "interference".

I will be following this development and will be interested to see if it works.

I take it because of my severe tourettes. I get 'dystonic' tics which twist me from top to bottom, mostly in my back and legs but often also in my neck and arms... everywhere really. It's helped a lot with those symptoms despite a 'professional' saying that it is not normally prescribed for Tourette syndrome! He's just grumpy because I found something helpful that he didn't prescribe!

I have not noticed any other positive affects other than on my muscle problems and severe tics. If anything, I've been getting steadily worse since I started taking it (although that's more to do with the crud going on in life) and I haven't noticed it making my autism symptoms less severe or easier to cope with.

I learnt the hard way though that it can cause extreme nausea if taken without food and that it has completely ruined what little coordination I had! I've decided that being able to stand up without twisting is much more beneficial than having about 1% coordination! Seriously I am literally falling over for no reason! It's so embarassing!

That is interesting because I know someone else who takes baclofen for dystonia. I also know a very senior psychiatrist who uses baclofen for depression and says it works in many stubborn cases where other medications don't work.

The work on alcoholism treatment, particularly at Boston Medical School under Dr. Susan Mosher Ruiz is beginning to focus on white matter dysphoria. That is nerve damage. White matter makes up half the brain and it has been largely overlooked by psychiatrists and doctors. Many "mental illnesses", it seems from my reading of this, may be related to nerve issues in the fine connecting nerves in the brain. Interestingly, the treatment for bipolar is lithium which aides neurotransmission. I find it intriguing that you have autism, which doctors have found is helped by baclofen, dystonia, which is nerve damage and helped with baclofen and depression, which is helped with baclofen. it seems to me you have an issue with connectivity. One of the top doctors in the world in this field is Dr. Jonathan Chick who treats Aspergers and uses baclofen for various illnesses. http://www.spirehealthcare.com/edinburg ... han-chick/

Have a look at his CV. He is very approachable and highly respected. If you are anywhere near his part of the world you might benefit from speaking to him and he will reply if you email him. Best wishes.