cannabis oil

My son is 15 now and lives with Aspergers . I believe and have always told him it’s not a disability it’s a fantastic ability! He suffers a lot from anxiety and depression now he’s a teen. At 10 years old he was fantastic, witty, unconscious comedian. He’s still is a brilliant boy but he’s now struggling to fit in with nurotypical kids his age. I refuse to give him anti depressants, beta blockers and any med that start with Risp! The side affects are worse than the benefits! 

I personally take cbd oil and I wouldn’t  give it to my child if I didn’t believe it works. I also disagree with some of the posts above about the scientific testing! If they looked into what the doctor prescribe our kids there is no comparison! 

There is so many ways you can give it to a child, oil isn’t one I’d advise. I’ve bought my son the CBD candies. 

All I can advise you to do is research aspergers/autism, trust you know your own child and trust your own decision. :) 

NAS37412 said:

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. 

NAS37412 said:

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.

NAS37412 said:

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.

NAS37412 said:

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.

NAS37412 said:

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.

NAS37412 said:

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:

NAS37412 said:

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

NAS37412 said:

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

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.

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 .

sorry to say you just have no clues. They are doing trial in Canada 

Hello!

our 10yo just been diagnosed and it has been recommended we medicate her “to soften her feelings so that she can learn healthier coping strategies so that we can rebuild her self esteem and so that she can progress to her full potential”

I am now looking at cbd oil as a possible alternative, we already use magnesium, pulsatilla, niacin and essential oils..I am aware that many dismiss homeopathic remedies but personally I would rather move in this direction than medicine..thankss for your insight regarding cbd, we do not wish to cure her quirks but rather make them more manageable for her and minimise her emotional distress when things go wrong..

Children are often given fairly strong meds from the GP as I was.
As an adult I occasionally use legal CBD oil and there are times when it does help.

All suppliers and oils are different ... some oils can be energising and others relaxing so requires experimentation.
Holland and Barrett do a mild version ... but I would recommend the blue or purple editions from CBD brothers,
CBD is not considered psychoactive or a drug so some of the other posters need to get off their high horse and drop their prejudice. CBD is quite subtle, but worthwhile in my opinion if needed ...  its effects are not miraculous and of course users will still be autistic ... but just with another coping tool.
It is bi-phasic so one must start with a low dose

personally, I think the truth of the matter is that it's a gamble my humble advice would be not too spend alot of money on something that isn't properly regulated or proven yet but best of wishes whatever decision you make

Thanks for your reply , I do appreciate all your positive comments and  advice  and I  take on board all that has been said.  I am aware autism is a life long condition and I am not chasing a cure. My grandson is a delight to us and we love him dearly he Is our world , but  we will have to be patient and see how he progresses , hopefully once he is officially diagnosed we will get more help and advice than we are getting now ,what we didn't realise was how slow the process is , but  I now understand a diagnosis cannot be made without seeing all the numerous specialists. I will try and stay positive.

I think it is better to think of autism as a lifelong condition, in the same way as blindness or deafness (leaving aside new technologies restoring sight or hearing). However while the impact can vary a lot through life it is not terminal or progressive.

Pentadactyl has made this point at the end of the last but one paragraph. "A diagnosis of autism is not all doom and gloom". It might be better to read around the subject rather than chasing cures.

Yes communication difficulties and rigid thinking and sensory sensitivities can make life difficult. But it is as much a different way of thinking, and there are some benefits for those less badly affected by the downsides, or who can rise above them. The focus and depth and chromaticism of thinking is massively enhanced, and while people with autism can be socially isolated, they may not find that so great a loss as it would be for you, and can get immense pleasure from the solitary pursuit of knowledge.

Aged 3 is early days and you don't really know to what level he will be affected. So best not to try to predict too much.

Thank you for your response, it is really interesting what you have written and the way you have explained it  . I do know that sadly  there is no cure for autism. it really was just a question and Im not going to read  any more on the subject. I down loaded a sample of the book you mentioned and it is, like you said easy reading. (I cannot read books that are to complicated) so I have purchased it and I will read it this evening. Its advice like this, from people like you that can make a differance to someone new to ASD,and I really do appreciate you taking the time to to this.

Dear pattym

I think that you are obviously doing this research for empathic reasons, however, you must be very careful in vetting information sources on the internet. After some minor research I have found some significant claims regarding the use of substances and treatment such as cannabis oil and similar claims from other, sometimes vastly different, treatments.

Regarding the use of cannabis specifically; there is indeed a lot of furore regarding the potential for the active components of this and similar drugs to aid in the treatment of a large variety of conditions (including conditions such as autism and Asperger autism all the way to certain types of cancer). Some of this research looks promising and appears to show some fairly surprising mechanisms of action.

However, where this research is occurring, this is not in the form of cannabis oil as supplied by the US vendours. Please be aware that the best treatment mechanism (application method, dosage and dosage form) are not currently known (for example, a high dosage may be detrimental and a low dosage may have no observable effect), as such uncontrolled use (which is what it would be where supplied by these websites) is not advisable.

I suspect that the potential for this drug, as advertised, to essentially ‘cure’ autism is the item which is of most interest. This cannot be verified and if further information is incredibly likely to resort to hearsay if further information on the cure was requested (i.e. testing was not confirmed by clinical trials and is likely to rely on unconfirmable success stories)

In addition to this, autism is a large variety of different symptoms given a single name (generally there are some ‘core’ symptoms which people with this condition are afflicted by, these may be mixed and matched depending on the individual, i.e.; not all autism is alike although there are likely to be similar aspects across multiple people).

Regarding general drug treatments for those with autism; depending on the severity of his autism, your grandson may be prescribed medication to help with his attention at school (e.g. Ritalin) or to prevent violent outbursts (e.g. risperidone). Where this is the case, the use of additional medications is not recommended without the consent of a physician/GP or both.

One thing which may help is a book called ‘reframe your thinking around autism’. It is a relatively simple and short book which discusses potential causes and motivations of your grandson’s actions/feelings, and how you may help him explore and be comfortable with them and his environment. It also contains some relatively safe online references for further reading, and should show you that a diagnosis of autism is not all ‘doom-and-gloom’.

I wish you all the best in your and your grandson’s future, but cannot emphasise enough the requirement for scepticism when vetting information from the internet.