We are concerned by stories about two dangerous products being peddled as 'cures' for autism and other disabilities and conditions:
These products can be harmful – do not use them in any circumstances.
There is no verified scientific evidence of any kind to support the claims made by those who promote and sell these products. Authorities, like the Medicine and Healthcare Products Regulatory Agency (MHRA) and the Food Standards Authority, are investigating people selling these products.
How many people are using these products?
A handful of people have contacted us about these products, in the main to raise concern that they exist.
We’ve also reached out to our volunteer-run branches to try to establish whether there is demand but received a very low response rate. We have supported journalists researching the sale and use of these products and we know that they too have struggled to find examples of people using the products. Thankfully, this suggests that very few people have considered using these products.
However our charity is, of course, not in contact with every person on the autism spectrum or family member in the UK, so we can’t be certain how many people may be considering using these products. We also know how difficult life can be for families who can’t get support and how vulnerable they might be to claims from dubious individuals or companies.
This is why it's so important that families have access to up-to-date and robust information about support, therapies and interventions and report any concerns they have.
A 'cure' for autism?
Autism is a lifelong condition. There is no 'cure' and the idea of aiming to 'cure' autism is often deeply upsetting for people on the autism spectrum and their families, who see autism as a part of themselves or their loved ones.
Autism can present many challenges but there are many approaches and forms of support that can help autistic people to live full and happy lives, whether in employment, independent living or a care setting.
We would advise anyone looking for support to seek out reliable information before making any decisions about approaches, from trained local professionals, NICE guidance or our own information.
The National Institute for Health and Care Excellence (NICE) looks regularly at what the evidence says about interventions for autism. Its Quality Standard on autism explains which interventions and therapies are effective and rules out others. You can also find out what approaches we have found helpful during the 50-plus years we've been working with autistic people by reading our position statement.
What can be done?
It's important to do everything we can to make sure vulnerable autistic people and their families don't fall for claims made about dubious and/or dangerous autism treatments and 'cures'.
- Equip the public with accurate and evidence-based information about which support, strategies and interventions can help.
- Campaign and work with professionals to improve support for autistic people, preventing them from falling into crisis and feeling the need to turn to untested therapies and interventions.
Vigilance and reporting
- Report the marketing and/or use of dangerous products targeted at autistic people.
- Alert the relevant authorities to dangerous products being marketed or sold so they can investigate and address their supply (see below for more information and contacts).
- We remain in contact with MHRA, who have advised people not to use GcMAF. They have recently confirmed to us that there is an ongoing investigation of GcMAF products. The MHRA also advise people not to buy MMS and they work with the Food Standards Agency who have issued warnings against using this product.
Is there any legislation in place?
We understand that some campaigners are calling for specific legislation to be introduced to stop the supply, marketing and use of dangerous therapies and interventions – often marketed as ‘treatments’ or even ‘cures’. Our charity shares their concern and agrees that dangerous products should not be sold or distributed. We’re always open to ideas on how to address this, and to adapting our approach (outlined above), but we do not believe that new legislation is the best solution at this time.
There are existing safeguards in place
- There are existing legal and regulatory systems and authorities governing medicine licensing, food and trading standards that have the power to investigate and stop the sale of dangerous products.
- It is already illegal to administer a harmful or dangerous product to another individual and can be prosecuted within the criminal law.
- Given that there is legislation in place already on the sale of dangerous products, we believe the best and quickest way of stopping the sale of these products is to make sure autistic people and their families get the support they need and have access to accurate and robust information about what works.
Concerns over efficacy of legislation
- There is very little evidence about the scale and nature of the problem, what any legislation would look like, how it would work and whether it would be successful. Without this evidence, it is not possible to make the case for legislation to any government. We are concerned that any legislation would be extremely difficult to formulate and enforce – not least because these products are available on the internet and, as far as we understand, are often sold as individual ingredients and only become illegal when put together. They also form a ‘moving target’ as charlatans and quacks find other products to sell.
- We’re also concerned that legislation would not stop people desperate for any solution from seeking out products which are already unlicensed and sold through ‘unofficial’ channels.
- We believe the time, effort and money that would go into creating new legislation would be better and more effectively spent enforcing existing laws and systems.
How we campaign
There are hundreds of things which we would like change about policy and public attitudes to make life better for autistic people and family members. But, our campaign work is funded by donations, so we have to prioritise to make sure we make the most impact. Find out how we decide what to campaign about.
What to do if you're concerned about a company or claim
If you are concerned about the practice of an individual or company or the claims they're making in relation to autism and therapies and interventions, please contact the relevant authorities below.
Emma Dalmayne and Fiona O'Leary are campaigning against these products, calling on governments to introduce new legislation. You can read more about their work at Autistic Rights Together.