Abusive 'cures' for Autism?
Autistic People are being offered and sometimes pressed into ‘cures’ with no evidence they work. Some are innocuous like vitamins, ear candles and aromatherapy… but others are dangerous and could be described as abusive. Some examples are exposure therapy (including slapping), MMS (bleach) and turpentine! Regardless of harm caused, they all take money for the privilege and promise something that isn’t available: a ‘cure’. The Westminster commission on autism has produced a report on the harmful interventions Autistic people face (2018). Barry Shearman, MP, characterises all these interventions as fraudulent which often result in physical, social, psychological and financial harm!
The Commission recognises that it is hard to identify which government agency is the right place to regulate these ‘cures’ and who to complain to when people are exploited or harmed and suggest actions to improve this. This difficulty was backed up by their survey result from Autistic people and their advocates. The report suggests the following places to report bogus treatments:
For products - The Citizens Advice helpline – 03454 04 05 06
For medicines – www.fakemeds.campaign.gov.uk
For human consumption/foods email – firstname.lastname@example.org
For non-medical interventions – www.asa.org/make-a-complaint.html
For things promoted on social media – use the platform’s/app’s complaints procedure
The report also offers some signs that a ‘cure’ might be bogus:
Emotional/personal stories are used to sell the product.
The seller is dismissive of scientific research.
The ‘cure’ is very expensive and/or the seller stands to gain financially.
It is claimed that only those who ‘believe’ or ‘have faith’ will get the ‘cure’.
The seller diagnoses additional conditions and treatments for them.
The long and short of it is: If your unsure ask your GP!
Recommended places to obtain useful interventions that have some evidence of helping Autism go to:
I think it’s great that this is being looked into. Having said that I do know people who have seen some results from some of the more innocuous (and cheaper) ends of the treatments mentioned in the report, like special diets. Unfortunately, without a scientific study, no one can definitively confirm their effectiveness. However, I feel it’s not necessarily fraudulent if the person offering help makes little to no money from it, they’re not selling a ‘cure’ (just an easing of related symptoms like anxiety) and they genuinely believe they’re helping. I’m not sure if it’s helpful for this parliamentary report to take therapies involving bleach and other abusive acts and lumping them in with poor aromatherapists rather than and brand them all as fraudulent.
I also feel there’s something missing from the report: why is this happening so much to the Autistic community? I don’t think it’s all about increased gullibility in the autistic population, but I think it’s more about desperation. As a mother of a child with ASD, I have felt abandoned by the system at times. I feel there’s little true understanding of how difficult life can be living with an adult or child on the spectrum. Families and carers are not necessarily getting the support they need after diagnosis and can feel abandoned. I believe many parents and carers feel helpless, and unaided after diagnosis, especially if their loved one is high functioning. High functioning individuals often keep it together in public and they are therefore not at the front of the queue for NHS funded support considering decreasing NHS budgets.
I think there's a misrepresentation of the lives of autistic people in the media which can also lead parents and carers to be more fearful of the diagnosis than they need to be. Poor communication by doctors can cause people to misunderstand the breadth of difference within the spectrum, leading to more panic than necessary over a diagnosis. Diagnosis or no diagnosis, they’re still the same person. These are a small fraction of possible reasons why fraudsters have the Autistic community in their sights. I feel this report was lacking by not investigation all social and psychological factors related to why Autism is being targeted in this way.
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