An Advocacy Guide For Neurodivergent People

Last night, I saw a post by Ellie Middleton sharing how her new GP said they'd refuse to continue prescribing her medication based on 'the validity of private diagnosis being called into question'.

Obviously this is completely ridiculous, given that she has been taking this medication for 3 years - but legally, they are allowed to refuse to follow shared care agreements. However, as I found whilst studying and working in law, situations are never this simple: there's also a lot of other legal obligations they need to follow, including consistent patient care and avoiding discrimination, which would strongly suggest that they can't do this in Ellie's case.

Advocacy has been my 'hobby' since realising that a 'nobody' like myself could write a book about exploitation in the fashion modelling industry which could influence the establishment of a working group tackling exploitation and lack of regulation in the creative industries.

During a law interview I was once told I was like 'David' in 'David and Goliath' (guess who the firm was). This was really frustrating to hear at the time, but I've realised that it's right: I have been fortunate to have a legal background, Autistic pattern-spotting, hyperlexic, social-justice obsessed brain, and ADHD impulsivity and bravery to act upon it.

So here is my passing on of the knowledge for fellow Davids - especially those who have a strong sense of social justice and determination to help others:

1. Think Cock Up - Not Conspiracy

I do apologise for swearing on LinkedIn, but a client once said this phrase to me and I thought it was the best thing I'd ever heard.

99% of the time, these situations that are so frustrating and annoying are down to misunderstandings, mistakes, and bureaucracy. Even so, we might understandably be on alert to these, especially if we have ADHD and our brain jumps to catastrophizing over the worst case scenario.

Usually it is the most obvious: a mistake. Someone saying the wrong information by accident. Easily fixable by a conversation. People very, very rarely mean to actually offend anybody else - at least in my experience!

However, as a company that works with hundreds of neurodivergent people on a daily basis, I can confirm that this isn't always our first response! I loved a recent complaint about one of our courses not having any ADHD knowledge in it, before having a conversation and helping the person to identify where the lessons they had not yet accessed were. 😅

2. Write things down objectively (privately!)

Writing a log of situations from a neutral perspective, with the date, time and people who were there, can help you to make sense of what to do next. For example, if you're in an employment situation experiencing repeated assurances about adjustments that never materialise, this log can help you to feel less like you're making it all up!

You need to be able to look at the facts objectively to be able to do something about it. Although it may feel very tempting to write an emotional letter out on ChatGPT and send their polished version immediately, this is only going to cost you in the future. I saw quite an ironic complaint from someone this week who clearly forgotten that they'd sent an emotional email completely counteracting what they'd said a few months previously. And breathe. 😅

3. Identify what you want

As neurodivergence and these situations can so often come with strong emotions and a sense of social justice, with a determination to to help others (often far more so than ourselves), this can complicate matters.

It also complicates things for the people being advocated at - I ended up on Lorraine when complaining about the modelling industry. We are unpredictable, because we don't correspond to traditional social norms like not quitting jobs because of the bills we need to pay!

However, my best advice is to be clear and reasonable about what you want as an individual. Not what big change you want to happen in society, or this situation not happening to anybody else: what specific, tangible change do you want for YOU on an individual basis to fix this situation?

For example, for Ellie it would be being prescribed her medication by her new GP. In a wider advocacy context, it might be changing a particular law or policy, or calling for a public enquiry into ADHD support like I did - just make sure it's something specific.

Remember that you do not have to change the world for everybody else - it's far better to live your life and 'be the change' rather than exhausting yourself by fighting systemic, ingrained problems within our society on behalf of others.

4. Identify who can help

Whilst posting on social media might feel validating and help to raise awareness of issues, most likely, the people who can actually do something about the issues don't follow you - or care.

It's also very, very hard to get media coverage, regardless of how important your work is (we work with The Book Publicist PR agency who are brilliant!).

When it comes to systemic issues like medication, the NHS, politics, policies, government bodies like Access to Work, and law, this is even more of a maze. However, I'd suggest:

• Finding the complaints process (usually on their website / in policies) - and following this, detaching yourself from the outcome as much as possible. Organisations are usually going to find in their own favour at first, especially in situations like grievances - it's just a checkbox.
• Establishing who has the power to do something about it - when I complained to a photographer agency once, I just guessed the owner's email address. Sometimes you need to copy in the 'highest' people you can find to alert them to it.
• Finding people who can help you - I strongly recommend lawyers like Sam Walkley and Tom Haines to support you, who are neuro-affirmative, brilliant people who regularly work with neurodivergent people. Having a lawyer who is not going to charge you to email them and who'll explain everything in a reasonable way is extremely important, and can be INCREDIBLY helpful. Just let them handle it all!

5. Decide what to do

By this point, it's worth pausing to decide what to do next. Change does not happen overnight, it's unfortunately over years of bureaucratic processes and thousands of small decisions and conversations. Advocacy isn't just starting a petition and chatting to the news - it's being clever, and recognising that this is a multi-pronged attack.

Here's some advice on approaches:

• Be reasonable: people are never going to react well to personal complaints. If you can try to put yourself in their shoes, you can pre-empt their reactions and perspectives.
• Be fair: we do a lot of checks on people who sign up to our ADHD coaching course before they start. Firstly, for safeguarding purposes, and secondly, because many of them have ADHD and their changing their mind once the course has started because they didn't realise how much work is involved is frustrating! So recognising the efforts both sides is important to be able to reach a conclusion.
• Ask questions: instead of making demands, ask questions, such as what they think can be done to resolve a situation.
• Identify what is important to the 'decision makers': usually it's not going to be their reputation (they probably don't care!) - most often, I see it being time. Complaining is a bureaucratic, annoying process that requires a lot of time, often from senior people within an organisation. So 'playing the game' and recognising this is important.
• Do your research: ChatGPT can be great for this. We may be biased to only seeing our viewpoint (i.e IT'S NOT FAIR!) but ChatGPT can provide a handy list of all of the laws and rights that are being potentially infringed. Quoting these makes it sound like you understand the law, or have spoken to a lawyer. The other thing that is likely important to decision makers is money, and not wanting other people to follow in your example!

In terms of advocacy itself, you may wish to consider:

• Public campaigns like petitions or protests: these are nice, but exhausting. Actually continually trying to get people to sign a petition is a lot of effort, especially when you set it up impulsively and experience Rejection Sensitive Dysphoria. I personally hate seeing the number of signatories and comparing this to the metrics on social media. Anyway, petitions are a good TOOL to raise awareness, but 90% of the time I personally doubt they result in much actual change.

• Parliamentary Debates / writing to your MP: working in legal policy showed me how incredibly painful and slow Parliament is. Some MPs are better than others, and if you email them, they do have to respond (although mine has stopped!). Some may be able to do things on a local level, like speak to the NHS Trust, so it's definitely worth it. However, they are probably limited in what they can do on a Parliamentary level, but they may be able to ask a 'question' during a debate, for example. You could help others to write to their MPs about the same issue by creating a template on a GDoc that they could copy and paste.

• Media / social media: this is a tough one. Media seems like a great idea, until your 100 emails to journalists are all ignored, or one interviews you and you are furious at how you've been made to sound. Social media is an echo chamber, and can result in legal correspondence, especially if you don't have tangible proof for your complaint. These can be extremely effective channels, but I'd recommend having a purpose in mind for them that aligns with your mission. Remember not to get distracted by the engagement online - whether that's comments, likes, or shares!

• Legal action: legal advocacy can be stressful, time-consuming, and expensive. Be absolutely 100% sure that you want to fight this, recognising that it is going to take up a HUGE amount of your energy, affecting every part of your life.

• Join others: you are always going to be more effective with other people than by yourself, so find people who have similar missions and experiences who can empower and support you, working together to make the change.

6. Be kind to yourself

Advocacy can be exhausting, soul-destroying, and emotional. It can be tireless and often needlessly pointless, on both sides.

Recognising that you do not have to save the world or everybody in it is extremely important. Yes, you may have certain privileges over others, but if you burn yourself out, you benefit nobody - least of all yourself.

Very often, you will be up against institutions and organisations that, put bluntly, simply don't care. It's great to be able to run a small business in ADHD Works and to personally be involved in every aspect of what we do, caring a huge amount about the people we work with and their experiences, but this isn't always going to be possible for large organisations or systems.

Large organisations like Government departments have blanket policies and rules that uphold the status quo. They probably get hundreds of similar complaints a day. The individual who is being complained at is probably exhausted and desensitised. So try compassion and understanding - starting with yourself.

This has been very beautiful to do within our neuro-affirmative course, in starting with recognising what we can and cannot control. One individual CAN change the world, but this often comes with changing our own actions, not others. Like refusing to give up a seat on a bus, striking from school for climate change, or in my case, writing a book to help others.

You can only do what you can do, and if you want to be free, let go. It is far better to enjoy your life and 'be the change' rather than shouldering responsibility for things that are simply out of your control.

I hope this has helped - and please remember, the world needs you and your voice. It needs you to keep going, to avoid burnout, to hold strong in the bureaucracy and be the change to empower others. You deserve to advocate for yourself, just as much as everybody else. 💜

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