A. Ethical Issues for Me
Keeping a blog about the life of a disabled person who cannot give ‘informed consent’ clearly raises ethical issues. Carers of people with limited communication (as is the situation with Dylan) negotiate ethical issues on a daily basis, a process of decision-making and review which means ethical practice is dynamic and continually evolving.
For the first two years of keeping this blog, while Dylan was living at home, my chief concerns focused on Dylan and his home and family. Where professionals involved in Dylan’s care were mentioned, it was by role only and care was taken to anonymise and protect the identity of settings and individuals.
When Dylan moved into residential care the ethical implications of keeping a blog changed. As I was no longer Dylan’s full time carer it did not feel ethical to continue to write about his life. Furthermore, Dylan would now be in close contact with a range of adults (other residents as well as staff) who it would not be ethical for me to write about. This blog’s shift in focus in September 2015 (from Living with Autism to Living With/out Autism) reflects these considerations and my attempt to respond ethically to them.
The ethical framework below applies to all material posted on this site, i.e. some of the points relate to the time when Dylan was living at home and some to the period following his move to residential care.
1. Beneficence (benefits)
- Dylan will benefit from the way the blog encourages me to scrutinise my own practice and to reflect on my relationship with him
- Dylan will benefit from the knowledge and skills I develop through my contact with autistic people and carers of autistic people through this blog
- Dylan will benefit from other people involved in his care having access to this blog and being able to build their knowledge of his life
- Dylan will benefit from being known, through this blog, as a real individual
- I will benefit from this process of review, which encourages me to reflect on my role as a carer and on my own life and needs as well as Dylan’s
- I will benefit from contact with others in a similar position to myself and with others who offer contact and affirmation
- Visitors to the blog (with and without autism and/or caring responsibilities) will benefit from the process of sharing and reflection
2. Non-Malfeasance (do no harm)
- I have identified some very personal topics which I will not write about in order to protect Dylan’s privacy
- I will not share material which I think could harm Dylan or make him vulnerable
- I will edit or remove any material which I feel is harming Dylan or myself
- I will anonymise and protect the identity of professional settings and the individuals who work with Dylan
- I will not refer to the other residents at Dylan’s residential home in my posts
- I will not write about other autistic people with whom Dylan has contact (e.g. personal friends) without consent
3. Informed Consent
This is a challenging issue for me ethically. Dylan does not have the verbal or intellectual capacity to give informed consent in the way which we would normally require. While Dylan was living at home with me I would talk to him about the posts I made and, where appropriate, let him select some of the visual images to accompany the post. However, he could not give consent to the verbal text. The posts made after Dylan moved to residential care focus on my experience of ‘separation’ and do not raise the same ethical challenges in relation to consent. Where individuals are identified in posts (e.g. family friends), consent was given.
Again, this is challenging within the context of individual stories and life histories. It is not possible to make myself anonymous due to my professional identity and profile as a writer. It does not feel plausible or possible for me to give my son a pseudonym or a contraction (such as ‘D’) as my son’s name already appears in other texts (for example in my poetry). I have, however, anonymised some details through omission or re-naming and I have protected the identity of other members of my family and our friends as well as professional settings and individual professionals. I have anonymised ‘walk-on’ parts in these narratives by identifying people by their roles only.
B. Ethical Issues for You
In visiting this blog please respect the fact that I have shared these personal details about my son’s life. Please also respect any information shared about other people by visitors to this site. I will moderate comments with the same ethical standards that I apply to my own blog posts. I will not approve any comments which I judge to be offensive to groups or individuals, or which I think are intentionally inflammatory or designed to hurt people. When commenting on posts please bear in mind that people viewing this site may be autistic themselves or care for someone who is autistic, and that they could be located anywhere in the world. Please celebrate and respect these cultural and neurological differences.
Visitors to this site are very welcome to take and adapt any of the ideas or approaches described in my blog posts; one of my purposes in setting up the blog is to share and disseminate knowledge, information and ideas so I would be very happy if people found something on the site which they wanted to build into their own practice. However, please note that the writing on this blog is my original work and any use of my writing (poetry or prose) should be acknowledged. The poems on this site have all been published previously and can be reproduced with appropriate acknowledgement of my books (see ‘Poems’ page on this site for details). The blog posts can be quoted from if you wish, but please acknowledge the source. Thank you.
Most of the images used on this blog are from my personal collection and were taken by me or by my children or Dylan’s care workers. I have been careful not to use photographs of Dylan which include images of other autistic children or adults (unless I have appropriate permissions). Other images are sourced from the internet and to the best of my knowledge are copyright free. I have attempted to use sources responsibly and ethically at all times. Where the source of an image is unclear or unknown I have acknowledged this and noted my appreciation. Any errors will be corrected promptly.
The statement on this page is likely to be revised and to develop in order to reflect the dynamic nature of ethical practice described here so please check back from time to time.
This statement was first posted on 1st September 2013
Updated w/b 18th October 2013
Updated 1st November 2013
Updated 21st December 2013
Reviewed 15th April 2014
Updated 4th June 2014
Reviewed August 2014
Updated 19th March 2015
Updated 13th September 2015
Reviewed 6th March 2016
Reviewed 9th September 2016