Living AuDHD

Autism reasonable adjustments are finally being spoken about! (It’s about time…) They’re something I’ve had a lot of personal experience with, advocating for myself in the workplace and in hospital settings.

Whilst I have hope that things can (and should) improve, it’s my lived experience that the world is often not kind to autistic people – or disabled people in general. We often have to claw autistic reasonable adjustments out of organisations. 

Autism self-advocacy is an important skill to build, but it takes time. For autistic people, our confidence has often been worn away by negative interactions and unkind social messaging. This often frames us as “difficult”, “complex”, or even a “burden”.

Autism self-advocacy requires us to learn that we are valuable just as we are, and that we deserve to have a place in this world as much as anyone else.

In this post, I hope to share some techniques that have worked for me as I self-advocated for my autistic reasonable adjustments.

Remember: you are NEVER a burden

Neurotypical people can make us feel that we’re weird for having sensory, social and processing differences. They can’t understand what it’s like to struggle with noise, light, texture and temperature, or to need more time or space to process information. They may interpret us as “difficult” and our reasonable adjustments as “troublesome”. 

It may not be deliberate. People may be rushing or may not have awareness about our difficulties. But it still hurts, and it can still affect how we view ourselves.

I know the shame that comes with speaking out – and the discomfort that comes with holding everything in. 

Sometimes it helps me to remind myself that I have the same right to be here as anyone else.

My needs are not “abnormal” or “difficult”. 

That’s the same for every disabled person. Needing a wheelchair ramp is not “being difficult”. Reading only in braille is not “abnormal”. Asking someone to dim the lights or explain a procedure beforehand is not “causing trouble”.

Autistic people can become overly conscious of how others perceive our sensory and social differences – because we’ve often been shamed for them.

You are NOT a burden. You are valuable and you deserve to have your voice heard. If someone doesn’t like you asking for autistic reasonable adjustments, that’s a them problem.

Don’t try to “just get on with it”

This can actually be a challenging step. Sometimes due to shame, I haven’t felt confident enough to come forward about what I need. Instead, I held it in and tried to “just get on with it”. 

Eventually, though, I couldn’t take the sensory discomfort and overstimulation any longer. But by this time, tears were flooding down my face and I struggled to explain to confused hospital staff what I needed. In many ways, this made the experience more traumatic.

Whilst it is absolutely the responsibility of hospital or GP staff to be up-to-date on neurodiversity, sadly this is often not the case in practice.

To make things easier on myself, I try to think in advance about what I might need. I ask myself what it is about a particular room or space that might make it difficult to access, and what would make it better.

Rather than holding it in or apologising for my needs, I try to be direct in my requests. Though it feels hard to speak up for your needs for the first time, it can help staff to fulfil your reasonable adjustments – and it feels empowering.

At the same time, don’t beat yourself up if you can’t manage it or become tearful. There will always be unexpected surprises and you should never shame yourself for expressing your needs. Not meeting your reasonable adjustments is their failing, not yours.

Understand your rights and their responsibilities

When you self-advocate for autism reasonable adjustments, it can feel like the other party has all the power. They’re often professionals, like managers or doctors, who can seem intimidating, even when they don’t mean to be.

With such poor mainstream understanding of neurodiversity, it’s important to understand what your rights are, what support you’re entitled to, and the responsibilities staff have towards you.

Reading about the Equality Act 2010 for workplace reasonable adjustments, for example, can give you the know-how to understand if you’re being treated within the legal guidelines or not.

Bring someone to support you

It’s okay to need extra support, especially when you’re dealing with sensory issues or a difficult meeting. In some cases, it might be better for a friend or family member to advocate for you if you’re struggling.

Sometimes if I become too overwhelmed or struggle to self-advocate for my autistic reasonable adjustments, my mum will step in. Whilst I generally try to manage things myself, it’s not always possible. Burnout or people-pleasing can make it difficult to request what I need. 

Society often shames adults for needing help, whether they’re autistic or not. But that’s unfair.

(It’s also based in harmful capitalist rhetoric that tries to force people to be completely “independent” from one another, when that’s simply not reasonable or even possible.) There’s nothing wrong with needing help and support from a loved one or carer.

Plan non-confrontational responses

In most cases, people are helpful about autism and reasonable adjustments. But when they aren’t, it can be very distressing. Autistic people often struggle with injustice and poor emotional regulation. That means we find it difficult to hide our feelings when we’re refused an important adjustment that we know we’re entitled to. 

I find it helps to script beforehand, thinking about what you might say when requesting a reasonable adjustment for autism. How can you explain what you need and why it would help you? How can you respond if this is refused?

My strategy for managing a refusal tends to be:

• Affirm their perspective (e.g., “I understand that, but…”)
• Stress the importance of why you need it (e.g., “I do need this adjustment as I won’t be able to cope with the appointment without it.”)
• Remind them of their legal responsibility if you need to (e.g., “Autism is a disability recognised under the Equality Act 2010, so it is a statutory right for me to have reasonable adjustments put in place.”)

You don’t need to be confrontational, just firm. If you don’t feel your reasonable adjustments have been handled fairly, you can take your complaint further. For example, in a hospital setting, you could speak with PALS, or in the workplace, you could submit a formal complaint. 

Complaining is a very challenging experience for many autistic people, as we often like to follow rules and fade into the background.

But if you feel able to do so, going forward with a complaint can force companies and organisations to see they have to make drastic changes in how they treat autistic patients, staff and customers.

Request extra time to process your response

Autistic people typically take longer to process information. When requesting reasonable adjustments, we’re often put on the spot for a quick answer.

If you’re able to, it can help to request additional time to think about your response. For example, if your manager refuses an adjustment, you can think about your response in more detail, so you don’t feel pressured to go along with it.

Set aside time for emotional processing

Autism self-advocacy can be exhausting. Once you’ve finished self-advocating, you may feel jittery, overstimulated, fatigued or distressed.

Give yourself time, when you’re at home or your favourite space, to relax, stim and process the experience.

It’s okay if you can’t manage anything else that day, you’ve made a huge step. Take time to reward yourself and remind yourself of how far you’ve come.