Our 3 year old boy is in the final process of officially being diagnosed, and we are probably like many other families , in that we are always online desperately looking for help/ advice that may help our boy, we have come across articles on cannabis oil ( albeit mainly on American sites ) has any one got any views on this? Is it legal here ,does it help, has anyone any experience of it ?
No, it isn't legal here and I would take a very dim view of any parent administering drugs to children. I'd have to question what you hope to achieve by using any type of chemical cosh on a child, legal or otherwise.
My best advice would be to be a proper parent - learn your child and help him. Blatting his brain is, in my view, abuse of the worst kind. Others will think differently.
Adult choices are a vastly different matter and are not relevant to your post.
Cbd oil is legal in uk now sold by holland and Barrett very unfair comment to say be a better parent to your child when nothing else works such as conventional medicine you have to try other ways it's hardly abuse to try and help your child cbd oil helps anormously in people with autism .
I am not medically qualified but would be very cautious. There are all kinds of fake 'treatments' out there that supposedly 'help enormously' but are positively harmful: http://network.autism.org.uk/content/westminster-commission-autism-reports-harmful-interventions
NICE's clinical guidelines summarise evidence against biomedical treatments for autism itself : https://www.nice.org.uk/guidance/CG142/chapter/1-Guidance#interventions-for-autism
I'm also suspicious when someone posts on a forum saying "I've just looked on the internet and found this new treatment" - in some cases, it can be a way of attracting desperate parents to something private companies and charlatans are making money from. (I noticed this here recently with another spurious 'treatment' costing thousands of pounds with a company based in Panama.)
If the intention is reducing epileptic fits that distress a child, there may be some limited evidence for cannabidiol (CBD) as an anti-epileptic agent: https://www.epilepsybehavior.com/article/S1525-5050(18)30009-X/fulltext
There was a recent story about CBD and a rare form of epilepsy that the Daily Mail gave a misleading headline to: https://www.nhs.uk/news/medical-practice/cannabis-oil-may-help-treat-rare-type-epilepsy/ CBD has not yet been shown to be a safe and effective treatment through clinical trials - for anything AFAIK, and of course autism is a difference, not something to be 'cured'. If you produced scientific evidence from a peer-reviewed journal that 'cbd oil helps anormously in people with autism', then it might be worth considering that information (there appears to be one clinical trial in progress at a private hospital in Jerusalem which interested people may want to check the results of: https://clinicaltrials.gov/show/NCT02956226?link_type=CLINTRIALGOV&access_num=NCT02956226 ). Otherwise, I have to say, stick to the professional advice and guidelines and save your money.
Awareness and acceptance that autism is a lifelong condition is key to a happy outcome.
It's because I went looking for scientific evidence that it's 'safe and effective' for anything related to autism (using PubMed), and don't see much beyond one trial that hasn't reported yet.
Here's five pages of article links from Science Daily:
Autism and Cannabidiol
There has been many years of research, just not in the UK.
Please, share the links to the research articles on CBD. It doesn't have to be from the UK, research is international, so any valid research articles would be ok. If you could let people know about the research, I'm sure it will greatly benefit a lot of people here. Even though the original post is 3 years old, people other than the original poster could still read about it. And if there is sufficient scientific evidence that it is helpful, then I'm in favour of promoting it as well. But you should back up your statements with solid evidence and logic.
How can you say 'anxiolytic' is not relevant to core autistic features?
Some autistic people are not very anxious. Maybe half are, but it varies from time to time and situation to situation. So anxiety is not itself a 'core' feature of autism (using that word in the same way as NICE). Meanwhile, pumping someone full of diazepam is likely to make them feel very relaxed, regardless of whether they are autistic or not.
You think disproportionate sensory processing and social communication issues cause no anxiety?
They are a factor, yes. But it sounds like you're not suggesting CBD in your experience significantly reduces hypersensitivity or increases typical social communication.
Are you autistic yourself?
I have a diagnosis of 'ASC/AS' from the NHS, and identify as autistic because that's the way my differences from 'the norm' (analytic focus, impersonal connection, executive dysfunction etc) are seen nowadays.
science unfortunately is part of a commercial enterprise so limited and biased
Most science is not commercial, and the activity is mostly about revealing and avoiding bias.
without real life experience its worthless
Science is based on real life experience. It's just structured so we don't fool ourselves.
After all that, by the way, I would say that I'm in favour of legalising cannabis for recreational as well as medical uses. I'm just against fads. (And of course worry about any claim to make an autistic person more like a typical person rather than change the situation causing distress.)
Fully aware of the bleach, quack and electro shock abuses ... but the post is about CBD.
There has been many years of research, just not in the UK.
I think their is a level of gratuitous ignorance on the subject here.
Anyway, I expect the original poster of 3 years ago has moved on now. I'm not a debater and there is nothing to be gained from commenting further, so I'll turn reply notifications off.
Agree with Cassandro regarding scientific evidence. Having scientific evidence would mean that they have tested it on a lot of people and have found it effective and safe for the majority of people they tested it on. I'm glad you found something that works for you. But with anecdotal evidence, you cannot be confident that it will be safe or effective for others. It is possible that it is effective for a lucky few, but may be useless or even be harmful for others. Therefore scientific evidence is needed. If you try something that is not scientifically supported, it means risking being cheated for lots of money or even ending up with unwanted side-effects (which could make the condition worse and some may even be irreversible). There have been parents who wanted to help their children with autism and gave them bleach to drink, https://mobile.twitter.com/sbaroncohen/status/960295540868214785, so it's necessary to consider the potential harms and benefits before trying something that is not scientifically supported.
The CBD element is certainly not a placebo effect.
You can disprove that theory straight away by trying it yourself.
Thats a perfect example of why relying on limited academic published evidence creates ridiculous theory not remotely grounded in reality.
Its an increasing problem these days.
Its a bit like memorising a car workshop manual but having no idea how to use a spanner, ECU testing gear, what oil smells like and how to treat skinned knuckles and pulled muscles.
Academia and tangible real life are not comparable at all.
CBD and THC are separate compounds that individually have different health benefits. Combined they work together to give greater therapuetic benefit.
How can you say 'anxiolytic' is not relevant to core autistic features?
You think disproportionate sensory processing and social communication issues cause no anxiety?
Are you autistic yourself?
I think your heavy bias toward evidenced based published academia is blocking your view of real life and real experience on this planet.
Its seems any interest you have is at a very early stage of investigation.
Myself, I'll investigate avidly for several years daily before I start reaching firm personal conclusions ... science unfortunately is part of a commercial enterprise so limited and biased ..... without real life experience its worthless
Thanks for the reply, and glad you've found things that help. Agree with much of what you say, but:
Search google
Yes, I had, but only for comparison, not for reliable information. Anyone can set up a blog or shop or Facebook page. In fact anyone can publish a book of opinions. But it's not scientific evidence, and I'm big on that as you may have noticed (and so were some other posters in this thread), Yes, I know there are many tricks pharmaceutical companies use to pervert the scientific process, but it's the best thing we have for finding truth. And yes, it requires an open mind (which to be truly open also admits the possibility of something not being true). So for actual medical data, by the way, I don't use Google (not even Google Scholar), but PubMed which I mentioned, and is a free public version of the MEDLINE database of abstracts.
I hadn't been following the Caldwells' story until you mentioned it (news and politics also usually has little to do with science). From the fact they had to go to Canada rather than Holland & Barrett, I'd surmise that low-dose THC is probably the active ingredient, and CBD probably only has a placebo effect. I may of course be wrong, but any effect sounds similar to a benzodiazepine hypnotic/anxiolytic, not relevant to 'core autistic features'.
Sorry if I made any incorrect assumptions.
What does it do for me you ask?
I would have killed myself without it, but hey, its only anecdotal.
For me it aids sleep, helps melt anxiety, reduces stress, pain relief, very significantly reduced alcohol intake and seems to have helped with bone healing.
I started it after a cancer diagnosis though I now know CBD alone (without THC) offers no cure for that.
I have fear of medication and medical appointments so don't use GPs much.
A lot of medical research is drug company funded ... there has been plenty research but I agree its not too easy to find without knowing where to look ... but one could say that about research on many herbal or not yet commercialised 'products'..
Not everything is launched onto the public plate.
Anyway, with moderation (due to its bi-phasic nature) I use it myself so understand what I have used .... Many autistics in online communities get relief from CBD - and also THC ... but ultimately we all research and investigate with our own bias.
Such a lot of commercially funded 'research' is not genuine and as you no doubt know manipulated statistics mean nothing in real terms.
Who's funding the 'research' seemingly influences the outcome in some way.
We are all at different stages of discovery about what makes this world tick.
Anyway, hope you can maintain an open mind.
CBD is routinely given to animals .... its effects are subtle but non the less useful.
A lot of research has been done in Israel and elsewhere.
Search google for cannabidiol.
Each to their own
CBD has been shown to be safe and effective ... just because you have no experience of it don't slate it
It's not because I don't have experience of it. It's because I went looking for scientific evidence that it's 'safe and effective' for anything related to autism (using PubMed), and don't see much beyond one trial that hasn't reported yet. Something is not going to get a licence as a medicine on the basis of anecdotes. I chose the links that come from reputable journals and websites not to 'fuel anxieties'; as others have said, there are snake oil salesmen out there, so I don't believe everything I read on the web.
I realise there are economic interests at work, and the pharmaceutical companies won't fund the necessary research for natural substances because they can't get a patent on them. I hope that means that any research that there is will be more independent.
As you say, the issue with Billy Caldwell seems to be over THC. It doesn't reflect on 'effectiveness' for autistic traits:
https://www.bbc.co.uk/news/uk-44510224
It is also different ethically with taking it yourself and giving it to a child.
So all we have is anecdotes: what does it do for you?
The NHS and government is anti CBD as its not 'formally' classed as a medicine.
The UK government is actually the worlds largest exporter of hemp for medical use ... (though lies to the public insisting it has no medical value) ... the drug ministers(Victoria Atkins) husband Paul Kenward is involved and the prime ministers husband has shares in GW pharmaceutical.
Its a farce. Even Nick Hurds sister in law has reportedly used cannabis oil
Things may change due to high profile cases (Billy Caldwell etc) over the news the last week or so. THe home office after threatening Billys GP has done a U turn and granted emergency licence though his oil is CBD with 2%THC.
CBD has been shown to be safe and effective ... just because you have no experience of it don't slate it ... the links are just chosen to fuel anxieties.
Seriously, I'm sure your intentions are honourable but do a lot... and I mean a lot more research.
You are right there are some appalling fake treatments and bad abusive attitudes to autism ... but using CBD as assistance is not one of them.
Its not magic, but can help some people a little, but its an individual affair.
To be fair, its a subject that is clouded by political and business interests, but research and much anecdotal info is out their for anyone wishing to search
The NHS and government is anti CBD as its not 'formally' classed as a medicine.
The UK government is actually the worlds largest exporter of hemp for medical use ... (though lies to the public insisting it has no medical value) ... the drug ministers(Victoria Atkins) husband Paul Kenward is involved and the prime ministers husband has shares in GW pharmaceutical.
Its a farce. Even Nick Hurds sister in law has reportedly used cannabis oil
Things may change due to high profile cases (Billy Caldwell etc) over the news the last week or so. THe home office after threatening Billys GP has done a U turn and granted emergency licence though his oil is CBD with 2%THC.
CBD has been shown to be safe and effective ... just because you have no experience of it don't slate it ... the links are just chosen to fuel anxieties.
Seriously, I'm sure your intentions are honourable but do a lot... and I mean a lot more research.
You are right there are some appalling fake treatments and bad abusive attitudes to autism ... but using CBD as assistance is not one of them.
Its not magic, but can help some people a little, but its an individual affair.
To be fair, its a subject that is clouded by political and business interests, but research and much anecdotal info is out their for anyone wishing to search
It's because I went looking for scientific evidence that it's 'safe and effective' for anything related to autism (using PubMed), and don't see much beyond one trial that hasn't reported yet.
Here's five pages of article links from Science Daily:
Autism and Cannabidiol
There has been many years of research, just not in the UK.
Please, share the links to the research articles on CBD. It doesn't have to be from the UK, research is international, so any valid research articles would be ok. If you could let people know about the research, I'm sure it will greatly benefit a lot of people here. Even though the original post is 3 years old, people other than the original poster could still read about it. And if there is sufficient scientific evidence that it is helpful, then I'm in favour of promoting it as well. But you should back up your statements with solid evidence and logic.
How can you say 'anxiolytic' is not relevant to core autistic features?
Some autistic people are not very anxious. Maybe half are, but it varies from time to time and situation to situation. So anxiety is not itself a 'core' feature of autism (using that word in the same way as NICE). Meanwhile, pumping someone full of diazepam is likely to make them feel very relaxed, regardless of whether they are autistic or not.
You think disproportionate sensory processing and social communication issues cause no anxiety?
They are a factor, yes. But it sounds like you're not suggesting CBD in your experience significantly reduces hypersensitivity or increases typical social communication.
Are you autistic yourself?
I have a diagnosis of 'ASC/AS' from the NHS, and identify as autistic because that's the way my differences from 'the norm' (analytic focus, impersonal connection, executive dysfunction etc) are seen nowadays.
science unfortunately is part of a commercial enterprise so limited and biased
Most science is not commercial, and the activity is mostly about revealing and avoiding bias.
without real life experience its worthless
Science is based on real life experience. It's just structured so we don't fool ourselves.
After all that, by the way, I would say that I'm in favour of legalising cannabis for recreational as well as medical uses. I'm just against fads. (And of course worry about any claim to make an autistic person more like a typical person rather than change the situation causing distress.)
Fully aware of the bleach, quack and electro shock abuses ... but the post is about CBD.
There has been many years of research, just not in the UK.
I think their is a level of gratuitous ignorance on the subject here.
Anyway, I expect the original poster of 3 years ago has moved on now. I'm not a debater and there is nothing to be gained from commenting further, so I'll turn reply notifications off.
Agree with Cassandro regarding scientific evidence. Having scientific evidence would mean that they have tested it on a lot of people and have found it effective and safe for the majority of people they tested it on. I'm glad you found something that works for you. But with anecdotal evidence, you cannot be confident that it will be safe or effective for others. It is possible that it is effective for a lucky few, but may be useless or even be harmful for others. Therefore scientific evidence is needed. If you try something that is not scientifically supported, it means risking being cheated for lots of money or even ending up with unwanted side-effects (which could make the condition worse and some may even be irreversible). There have been parents who wanted to help their children with autism and gave them bleach to drink, https://mobile.twitter.com/sbaroncohen/status/960295540868214785, so it's necessary to consider the potential harms and benefits before trying something that is not scientifically supported.
The CBD element is certainly not a placebo effect.
You can disprove that theory straight away by trying it yourself.
Thats a perfect example of why relying on limited academic published evidence creates ridiculous theory not remotely grounded in reality.
Its an increasing problem these days.
Its a bit like memorising a car workshop manual but having no idea how to use a spanner, ECU testing gear, what oil smells like and how to treat skinned knuckles and pulled muscles.
Academia and tangible real life are not comparable at all.
CBD and THC are separate compounds that individually have different health benefits. Combined they work together to give greater therapuetic benefit.
How can you say 'anxiolytic' is not relevant to core autistic features?
You think disproportionate sensory processing and social communication issues cause no anxiety?
Are you autistic yourself?
I think your heavy bias toward evidenced based published academia is blocking your view of real life and real experience on this planet.
Its seems any interest you have is at a very early stage of investigation.
Myself, I'll investigate avidly for several years daily before I start reaching firm personal conclusions ... science unfortunately is part of a commercial enterprise so limited and biased ..... without real life experience its worthless
Thanks for the reply, and glad you've found things that help. Agree with much of what you say, but:
Search google
Yes, I had, but only for comparison, not for reliable information. Anyone can set up a blog or shop or Facebook page. In fact anyone can publish a book of opinions. But it's not scientific evidence, and I'm big on that as you may have noticed (and so were some other posters in this thread), Yes, I know there are many tricks pharmaceutical companies use to pervert the scientific process, but it's the best thing we have for finding truth. And yes, it requires an open mind (which to be truly open also admits the possibility of something not being true). So for actual medical data, by the way, I don't use Google (not even Google Scholar), but PubMed which I mentioned, and is a free public version of the MEDLINE database of abstracts.
I hadn't been following the Caldwells' story until you mentioned it (news and politics also usually has little to do with science). From the fact they had to go to Canada rather than Holland & Barrett, I'd surmise that low-dose THC is probably the active ingredient, and CBD probably only has a placebo effect. I may of course be wrong, but any effect sounds similar to a benzodiazepine hypnotic/anxiolytic, not relevant to 'core autistic features'.
Sorry if I made any incorrect assumptions.
What does it do for me you ask?
I would have killed myself without it, but hey, its only anecdotal.
For me it aids sleep, helps melt anxiety, reduces stress, pain relief, very significantly reduced alcohol intake and seems to have helped with bone healing.
I started it after a cancer diagnosis though I now know CBD alone (without THC) offers no cure for that.
I have fear of medication and medical appointments so don't use GPs much.
A lot of medical research is drug company funded ... there has been plenty research but I agree its not too easy to find without knowing where to look ... but one could say that about research on many herbal or not yet commercialised 'products'..
Not everything is launched onto the public plate.
Anyway, with moderation (due to its bi-phasic nature) I use it myself so understand what I have used .... Many autistics in online communities get relief from CBD - and also THC ... but ultimately we all research and investigate with our own bias.
Such a lot of commercially funded 'research' is not genuine and as you no doubt know manipulated statistics mean nothing in real terms.
Who's funding the 'research' seemingly influences the outcome in some way.
We are all at different stages of discovery about what makes this world tick.
Anyway, hope you can maintain an open mind.
CBD is routinely given to animals .... its effects are subtle but non the less useful.
A lot of research has been done in Israel and elsewhere.
Search google for cannabidiol.
Each to their own
CBD has been shown to be safe and effective ... just because you have no experience of it don't slate it
It's not because I don't have experience of it. It's because I went looking for scientific evidence that it's 'safe and effective' for anything related to autism (using PubMed), and don't see much beyond one trial that hasn't reported yet. Something is not going to get a licence as a medicine on the basis of anecdotes. I chose the links that come from reputable journals and websites not to 'fuel anxieties'; as others have said, there are snake oil salesmen out there, so I don't believe everything I read on the web.
I realise there are economic interests at work, and the pharmaceutical companies won't fund the necessary research for natural substances because they can't get a patent on them. I hope that means that any research that there is will be more independent.
As you say, the issue with Billy Caldwell seems to be over THC. It doesn't reflect on 'effectiveness' for autistic traits:
https://www.bbc.co.uk/news/uk-44510224
It is also different ethically with taking it yourself and giving it to a child.
So all we have is anecdotes: what does it do for you?
