Tobias Jussen

 

In formal medicine and allied professions, therapies are recommended on the grounds of being evidence-based. The hierarchy of evidence tells you how strong and reliable that evidence is.

In this post, I will also be using the term evidence in the manner in which it is used in the legal sphere, as in prima facie evidence, i.e. even if there is only one CCTV camera recording clearly showing the suspect committing a murder, we do not need to see repeated murders by the same suspect to judge them as guilty and convict them of murder in a court of law.

One key piece of evidence is missing from many therapies and treatments imposed on disabled people: evidence of support by patients. We see this in some of the treatments prescribed to ME/CFS patients, and we see it in autistic patients.

The UN Convention on the Rights of People With Disabilities (CRPD) has been adopted by most countries. The CRPD essentially says that disabled people have a right to determine their own destiny. However, the ethics committees that oversee medical research, such as the current AIMS-2 trials in Europe, do not generally ascribe to the principles set out in the CRPD.

Applied Behavioural Analysis (ABA) is the main therapy prescribed to autistic children upon diagnosis in the USA and a number of other countries. There is no evidence of widespread support, let alone meaningful participation in the development of this therapy among actual autistic people. On the contrary, there is widespread evidence of protests against this method. There is also published evidence of attempts by parties with a vested interest in ABA to discredit autistic people who report ABA as abuse.

The next time someone tells you that their therapy for a disabling condition is ‘evidence-based’, ask them for evidence that it complies with the CRPD.


PS: I just realised that if I don’t put references into this post, some clever person is going to see the hypocritical gap, and accuse me of making a statement without providing evidence! OK. I’ll update this post once I have gathered it all together.