I think I would start by looking at the guidance already being widely used, and see what adaptations are needed. The NCTJ (National Council for the Training of Journalists, UK) has a style guide that touches on the issue, as does the Associated Press. All major newspapers and magazines maintain their own internal style guides and most of these go far beyond 'style' and into issues of ethics and practice. To make a change, what you create needs to fit well with these existing sources.
In the UK the new press regulator IPSO should have something on this topic -- the old PCC did.
I'm very pleased to see attention being paid to the ethical issue of parents writing about disabled children. As someone who stepped over the line in this one early in my career as a freelance journalist (my profession before academia)--editors will push for it, and when your livelihood relies on a constant stream of commissions to survive, that pressure is hard to resist.
This is especially true for writers who are parenting disabled children, who may be freelancing because of the lack of flexibility in work, lack of disability-friendly childcare (no centre would take my child as a toddler), and inability to count on school not calling to ask you to come get your child at any hour of the day. These are freelancers who need all the official guidance we can offer, and all the backup possible to say no to pushy editors.
There are ways to do it where anonymity is respected but even then, your kid probably knows. The impact of that is something never mentioned in journalism school, but I've seen serious, negative impact on writers themselves and their families as a result of engaging in 'confessional' journalism, memoir and personal blogging or column-writing.
Regards,
Dr Mitzi Waltz
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