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Autism Research


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#1 Mumsyto2

Posted 11 April 2012 - 03:43 PM

For those who may be interested I thought Id advise of a newly launched international consortium of scientists that represents one of the largest-ever academic-industry research collaborations aimed at finding new methods for the development of drugs for autism spectrum disorders (ASDs).  Hopefully something will come of it.

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European Autism Interventions A Multicentre Study for Developing New Medications (EU-AIMS) is the largest single grant for autism research in the world and the largest for the study of any mental health disorder in Europe.

EU-AIMS will oversee an academic partnership of 14 European centers of excellence and is supported to varying degrees by leading autism charities, industry and government. The ultimate goal is to facilitate the development of medications to treat ASDs.

EU-AIMS will focus on three areas: the development and validation of translational research approaches for the advancement of novel therapies for ASDs; the identification, alignment, and development of expert clinical sites across Europe to run clinical trials; and the creation of an interactive platform for ASD professionals and patients.

The research of EU-AIMS receives support from the Innovative Medicines Initiative (IMI), the largest public-private partnership in the area of medicine. IMI focuses on reducing bottlenecks in biomedical R&D and is organized around four pillars: efficacy, safety, knowledge management and education and training.

ASDs affect an estimated 1 percent of children worldwide and more children will be diagnosed with autism this year than with AIDS, juvenile diabetes and pediatric cancer combined. Although new knowledge and research findings emerge every year, it has been hard to take these findings into the clinic. The nature of the collaboration across pharma, academia and advocacy groups aims to overcome some of those challenges.


#2 ChickenNuggets

Posted 11 April 2012 - 03:49 PM

Hmm... interesting.... I think the risks of medicating my DD would be greater than the potential benefits (speaking about her and her only....)

People say they lose their kids to Autism.... I think I'd be upset to lose my DD to "normal" wink.gif

Edited by ChickenNuggets, 11 April 2012 - 03:50 PM.


#3 item

Posted 11 April 2012 - 03:57 PM

Mumsy, that is really interesting, thanks.  Will be fascinating to see what they come up with!



#4 sad small umbrella

Posted 11 April 2012 - 04:32 PM

QUOTE (ChickenNuggets @ 11/04/2012, 03:49 PM) <{POST_SNAPBACK}>
Hmm... interesting.... I think the risks of medicating my DD would be greater than the potential benefits (speaking about her and her only....)

People say they lose their kids to Autism.... I think I'd be upset to lose my DD to "normal" wink.gif


I'd be devastated to lose my guys to meltdowns, anxiety, depression, attention issues and totally miserable lives *for them*.  You may very well find as you come to grips with autism and as your daughter grows, the risks of meds such as they are far outweigh seeing your child miserable and not functioning.

Nobody medicates their kids to normal and I am kinda aghast that you could write that here in this thread.  Respect goes both ways and if your child is so mildly affected by ASD that choosing not to medicate is a no brainer, I am genuinely glad for you.  I don't think any of us medicate lightly and I don't think any of us were silly enough to believe it would normalise them.

The research iniatitive looks really interesting.  Some hard evidence based research on meds would be a fabulous thing.

#5 2bundles

Posted 11 April 2012 - 05:43 PM

Chickennuggets - you are very early on this path. I also have a child who is "mild" in asd symptoms, but as school goes on it seems harder for him to integrate.  His challenges in the classroom (behavioural) lead to social issues, and are now beginning to affect his learning.

We would have said "never" to medication even last year, but now we are at the point where we at least need to trial it for his sake.

Edited by 2bundles, 11 April 2012 - 05:45 PM.


#6 Super Cat

Posted 11 April 2012 - 06:07 PM

J is only three and last month I found myself looking hopefully at the Paed for a prescription, of what I don't know, that might stop the meltdowns and self harming.



#7 item

Posted 11 April 2012 - 06:38 PM

Oh I thought I posted 15 mins ago.  Stupid phone.

F&E, very eloquently put.  Especially the aghast bit.

I take medication for anxiety related to my ASD, the dosage is halved as per recommendations from Temple Grandin (yeh my GP and I are very scientific).  I have no idea if this has any research behind it yet, but I would love for this area to be further explored as the 'non-therapeutic dose' has worked wonders for me.  

DS does not have any behavioural/concentration issues however is showing signs of some mild social anxiety. Whilst there is no way we would consider medicating him now, I can see it might be a possibility in the future.  I can totally understand there are many many children and adults on the spectrum who require medication for a variety of reasons and I thinks its wonderful there is being some research done which may help guide decision makers.

#8 ChickenNuggets

Posted 11 April 2012 - 06:47 PM

Sorry, have had a nightmare of a day (think forensics still in my backyard...) and fired off my response quite quickly... I thought the "her and her only" part would indicate that I'm only talking about her level of difficulty, at this point in time etc etc.... that said - If a prescription could be tailored to "fix" the bad stuff, but leave the awesome stuff, I'd take it any day of the week - but it's unlikely. I guess in the event things became progressively worse, I might have to think long and hard about sacrificing some of the "good" to fix the downright awful.

It's all just hypothetical for now though.... I do hope that they suss it out, because I can see the usefullness.

#9 baddmammajamma

Posted 11 April 2012 - 07:27 PM

Mumsy, thanks for sharing.

Anything "evidence based" sits well with me. and anything that safely opens up more options to families dealing with ASD does, too.

ChickenNuggets, I appreciate what you were trying to say. Sometimes fast answers on the internet just don't convey/emphasize what we really mean.

#10 item

Posted 11 April 2012 - 07:28 PM

I doubt they will develop a medication which can cure ASD, at least any time soon.

I suspect they are looking at treating 'side effects' of ASD (not the exact right term, maybe 'specific barriers' is a better term) to help people become more functional.

#11 Mintjelly

Posted 11 April 2012 - 07:28 PM

Erin, when I had to make the decision to medicate DD I was devastated!  I thought it would make her a zombie and she would loose the highs as well as the lows.  It took a lot of soul searching for me to eventually even trial it.

It was only my BFF saying to me, put her on it for a trial, if she turns into a zombie take her off it and go back to the drawing board.

So I trialled it, and the results were amazing.  Nothing like what AD's had done to me in the past (ie flat lining emotion wise)

She is sooo much happier, and copes so much better socially than ever before. She went from an incredibly negative little girl, to a little girl who walks through the house singing to herself  wub.gif  I most definitely did not loose her to the medication, rather got back the happy little girl I know she can be!

Obviously as per my last thread when there is a lot of stress she reverts to having meltdowns, in fact atm she is quite manic.  But we have actually upped her dose to 3/4 of a tablet, just to help her manage for the next 7 weeks or so.

It is not just about her happiness (she is so upset when she hurts her siblings) but also for her siblings who become quite scared of her when she is in this frame of mind.

Not saying you ever have to medicate if you don't want to, rather just letting you know that I felt that way prior to going there iykwim.

I am afraid that I am not cluey enough to even understand how they would begin to go about trialling things  unsure.gif I know that brilliant scientific minds, can do things that don't even register in my brain lol,

Edited by Mintjelly, 11 April 2012 - 07:31 PM.


#12 Mumsyto2

Posted 11 April 2012 - 07:37 PM

QUOTE (ChickenNuggets @ 11/04/2012, 07:47 PM) <{POST_SNAPBACK}>
Sorry, have had a nightmare of a day (think forensics still in my backyard...) and fired off my response quite quickly... I thought the "her and her only" part would indicate that I'm only talking about her level of difficulty, at this point in time etc etc.... that said - If a prescription could be tailored to "fix" the bad stuff, but leave the awesome stuff, I'd take it any day of the week - but it's unlikely. I guess in the event things became progressively worse, I might have to think long and hard about sacrificing some of the "good" to fix the downright awful.

It's all just hypothetical for now though.... I do hope that they suss it out, because I can see the usefullness.

I'm not sure why you are so convinced that any potential and at this stage hypothetical ASD medicine will definitely destroy the 'awesome stuff' and 'sacrifice the good'. I'm not saying it won't but there is no evidence that it would. At this stage as I anticipate any such medication would have quite a unique mechanism unlike anything we have experienced to date in regards to medications in the mental health arena yet you seem so fixated in your mind that it would follow a certain formula and have certain effects. I don't know either way but am leaving my thinking open in this regard until I see what if anything comes along.

I don't mean to pick but your thinking re medications destroying the essence of the person and what makes them them etc seems to mirror stuff often expoused by the anti kid med camp who actually don't have kids on meds, don't have any close contact with kids on meds and is based on heresay from old experiences with meds when there was very little idea re appropriate dosages etc so kids/people did seem to turn into zombies when medicated and yes lose their 'spark', the bit of them that made them unique and so on.  We have come a long long way though in this regard from those initial days and people just don't seem to understand this. Not saying all meds are great for all people and it is such an individual response in this area but often they are all tainted by preconceived ideas.

Edited by Mumsyto2, 11 April 2012 - 10:31 PM.


#13 Cat©

Posted 11 April 2012 - 07:39 PM

I'm a bit on the fence. I would appreciate anything that could make DS's life better and mine more relaxed, however I'm terrified of most medications after some disatrous results early on.

One of mine is still medicated, and without it becomes a stressed aggressive unmanagable darling (not), so for that Im grateful.

I really need to medicate two others of mine but Im just so terrified I havent.......hopefully they will come out with some better options for people like me in the future. Some not so scary medications (although I'm sure there are some out there now but Im just too scared to try).

Edited by Cat©, 11 April 2012 - 07:41 PM.


#14 Mumsyto2

Posted 11 April 2012 - 07:48 PM

QUOTE (item @ 11/04/2012, 08:28 PM) <{POST_SNAPBACK}>
I doubt they will develop a medication which can cure ASD, at least any time soon.

I suspect they are looking at treating 'side effects' of ASD (not the exact right term, maybe 'specific barriers' is a better term) to help people become more functional.

This is correct. It is being looked at as a therapy not a cure. In this case medication is being targeted as the therapy.  i think it would also be naive to think it would be a magic pill in that it will be a one stop shop. I imagine all the other relevant therapies would still be required, it would not replace early intervention, behavioural therapies etc and that it's purpose would be solely to increase function. Also a  bonus would most likely be that it would make the person more 'receptive' to the adjunct therapies which would be great.


#15 FeralZombieMum

Posted 11 April 2012 - 08:12 PM

Thanks for posting Mumsyto2, I am quite excited to read about this and it's made my day brighter. biggrin.gif

ChickenNuggets, I know you're trying to post about the right thing - but really, you are very inexperienced in the world of both ASD and Medication, so I understand your opinion is somewhat misguided and uneducated.
I mean no offence with this and am having trouble wording it right myself. I can imagine your views will change one you have travelled further along this journey and realise there are problems with ASD that require medication. wink.gif

Cat, I am excited on your behalf. Tounge1.gif I hope your family can benefit from this...however long it takes. biggrin.gif

#16 bluecardigans

Posted 11 April 2012 - 08:56 PM

Thanks for posting original.gif DS takes medication mainly for aggression. We have had terrible weight gain though, he went from 25 to 45 kg in six months sad.gif  We tried decreasing the offending medication, but the aggression and self injurious behaviour went through the roof. We were all carrying so many injuries we had no choice but to put the dose back up.

It would be fantastic if there was a medication as effective without the side effects.

#17 sueb31

Posted 11 April 2012 - 09:49 PM

You may have all seen it, but this UK Autism research website is a good resource for looking at the available evidence for all forms of treatments.
http://www.researchautism.net/autism_treat...eticallist.ikml

You have to click through a few screens to get to the details.

Sue

#18 ChickenNuggets

Posted 12 April 2012 - 10:12 AM

QUOTE (ZombieMum @ 11/04/2012, 08:12 PM) <{POST_SNAPBACK}>
ChickenNuggets, I know you're trying to post about the right thing - but really, you are very inexperienced in the world of both ASD and Medication, so I understand your opinion is somewhat misguided and uneducated.
I mean no offence with this and am having trouble wording it right myself. I can imagine your views will change one you have travelled further along this journey and realise there are problems with ASD that require medication. wink.gif


My bold - this highlights where we're misunderstanding each other - I feel you're insinuating that these problems WILL arise for my child.

This article probably explains my thoughts, and what I'm trying to say, to some degree:

http://lostandtired.com/2011/07/16/the-mos...take-in-autism/

Of course I'm aware that they are a harsh reality for many families. I'm not blind to this - but Autism isn't new to me, I just didn't have a name for it before..... I have lived for near on 27 years as a woman with AS. At no point was I medicated, nor did my parents consider that my behaviours need medicating. This is where I base my opinions... for my family... based on my experience.

If my DD is to follow in my footsteps, and "escape relatively unscathed" then I see no need to medicate her. I understand that yes, there is more than a small chance she will cope differently, but in the event that she is effected in similar ways to me then no - I will not be medicating her. Sure it's hard at times, but my personal preference is to explore other avenues, being that these worked for myself .... and that she's a lot like me as a child.

You can't paint all people with ASD with the same brush. As I said right from the start in MY experience, and MY situation, I would not feel comfortable with the risks/possible side effects of any new medication. As for what happens if things change, or if things were different - sure, I'm open to the idea.

I'm not saying I'm anti-meds, or that they're a bad idea, or that nobody should medicate their ASD child, but as far as MY child goes, I would think long and hard, because OUR circumstances are not the same as everyone elses. In the event that her behaviour/struggles reach a point that my way isn't working - I'll be off like a shot to the GP/Psych/Paed to have a script written up. No hesitation.

#19 UpsyDaisy

Posted 12 April 2012 - 01:07 PM

I also think it wonderful that some evidence based research is being done in this area.

I'm still confused a little by this statement:

QUOTE
The ultimate goal is to facilitate the development of medications to treat ASDs.


What do they mean by medications to "treat' ASDs. Do they mean a medication to 'cure' ASD or to treat the underlying symtoms of ASD or to improve the medications already available for children/adults with ASD, or find a one fits all medication to treat ASD in general. I find this article isn't clear enough for me, to respond beyond what I've already stated, as it isn't clear enough to me "exactly" what they mean by "medications to treat ASDs".

FWIW - I think you've been a little to hard on ChickenNuggets. I'm informed enough and have been doing it long enough to understand ASD and that it is a spectrum. I took all her comments to mean her statement refered to "her and her child only" and wasn't mean't to be a generalisation. Disclaimer - This is just my opinion based on how I personally read her comments. Thanks original.gif

Edited by UpsyDaisy, 12 April 2012 - 01:09 PM.


#20 UpsyDaisy

Posted 12 April 2012 - 08:22 PM

I've found this information from a link from facebook. It appears to be a newspaper, so obviously not a published journal or peer reviewed journal article, but it kind of reminded me of the OP's link. Definitely interesting and worth the quick read.

http://www.boston.com/Boston/dailydose/201...gvIM/index.html

ETA - Ok, the link does say the study was published in a journal. My bad LOL.

Edited by UpsyDaisy, 12 April 2012 - 08:24 PM.





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