A few months ago we decided to allow guest bloggers to post on our website and we posted a blog about the use of essential oils in the treatment of ASD.
I clearly stated in my introduction that the opinions of the guest bloggers were not my own and CoAbility did not endorse their views or products and at the time, I felt this was a sufficient disclaimer. I never gave it another thought until I received a feedback letter from the parent of a former client explaining to me why my decision to allow the blog to be posted was harmful.
At first, I was mortified at the feedback given in the letter, as it is often hard to hear that you have gotten it wrong or in fact upset another human. However, as I sat on the information provided and I started to look at it through the eyes of parents with newly diagnosed children I understood this mums opinion on a cellular level.
“I hope you appreciate that feedback is given as you have a strong voice in the disability community, and a wide reach to a diverse audience, which includes parents of newly diagnosed children. I want to let you know that as the parent of a severely autistic child, I am very upset you would include that ad for essential oils in your email (and it is an ad, as they are attempting to drum up business, by inviting people to reach out to them, and their brand is well documented as being a multi-level marketing scheme)
There is no evidence for the use of essential oils in children with ASD. There are no credible studies supporting this. Their anecdata doesn’t change that…
Unproven, unregulated therapies have incredible capacity to hurt those exposed to them. Some parents go to the extreme of putting these oils in food and drinks, and directly on the skin. The oils may be a natural product. So is asbestos. Natural doesn’t always mean better. As you may be aware, the ECI guide for autism intervention notes that ASD parents will never know less about autism, then they will when their child is diagnosed. It is an emotionally trying time, and a time when families will be most likely to engage with support workers, including support coordinators.
You and your staff, whether you are directly aware of it or not, have a level of faith and trust put in you and what you do and say. Why wouldn’t we trust you? Why wouldn’t we think if you are happy to promote it, then it must be ok. You are absolutely entitled to your opinion, and to your views on oils. No one is doubting or denying that. However, I would ask that you keep in mind that families that are pushed to the mental and physical limit may accept what is being promoted, without questioning. It may seem like they are just selling oils, but what they are basing that sale on is the hope that they promise, and that is nothing short of cruelty.”
Now I have never been the parent of a child with an ASD diagnosis, and while I can empathise with the despair, anxiety and heartbreak that must come with it, I have never had to think about what this diagnosis means for my child and their life. However, I do have four children, including one with a recent diagnosis of a neurodegenerative autoimmune disease and I know that I would do absolutely anything to change that reality. So hearing this feedback from a mother of a child with ASD affected me immensely and prompted the removal of the post.
I concede that in this case, I allowed an opinion to be put forward without doing my due diligence and fully accept the point that the blog was selling a false promise. We got it wrong and for that, I apologise.