Living AuDHD

Autism sensory issues in adults should not be underestimated. We’re often made to feel that we should just “shake off” our sensory issues – as if autism magically ends when we turn 18. That can lead to deep feelings of shame. That’s especially true for self-diagnosed or late-diagnosed autistics, who have likely been told “it’s just a bit of anxiety”.

Autism sensory issues can’t be treated the same as phobias – nor should they be. Neurotypical psychological therapies, such as exposure therapy, are typically unhelpful to autistic people. In fact, they often do far more harm than good.

These “treatments” can reinforce feelings of powerlessness and shame amongst autistic people, as we’re forced to endure our sensory issues. Autistic people should not have to suffer when trying to live our daily lives – whether visiting the shops or attending appointments.

With all this being said, sometimes we have no choice but to visit places that are sensory nightmares. Hospitals are very triggering for me, but at some point, I’ll need to use them to have treatment or tests.

Sometimes I’ve genuinely felt like I’d rather die than go through a bad sensory experience – and I’ve known others who have avoided serious medical treatment because of the environment. 

If you feel like you’re in the midst of sensory overwhelm, and you’re not sure you can even picture living a normal life, know that you’re not alone in this.

Whilst autistic sensory issues never disappear, there are ways to manage them without repressing your needs. In this post, I’ll cover some of the steps that I’ve found help me to manage my sensory issues with self-kindness and understanding. 

My experience with autistic sensory issues as an adult

Once, I had to go to the hospital for breast cancer testing. The hospital was huge, loud and brighter than the sun. The only way I could get through the building was for my mum to go ahead of me, warn me about what the next room was like, and then I would follow. I really didn’t know if I would be able to go through with the tests, because the environment was so intense. 

I got through it – and fortunately the tests were fine – but an already difficult day was made a million times worse by sensory issues.

Sometimes neurotypical people interpret our “behaviours” as “difficult” or “attention seeking”. But the truth is we act as we do in response to intense sensory discomfort.

Autism sensory issues in adults are not something that can just be brushed off. You shouldn’t blame yourself if you’re struggling to cope with an environment.

Over time, sensory issues created a lot of anxiety within me. I often worried about how I would cope if I had to go to hospital or whether I would be able to use a public toilet when I went out of town. This then had a huge impact on my overall mental wellbeing and self-esteem. I was always on-edge.

This then fed into other issues, like with socialising and advocating for myself. Autistic people often have to fight to get the reasonable adjustments we need, and it can be embarrassing to explain why you’re struggling with a particular environment.

Along with advocating for change, to do the things we want to in a neurotypical world, we need to be equipped to manage the sensory issues we deal with in everyday situations. However, this must be handled in a neurodivergent way, not just through brute force or graded exposure. Autistic sensory issues have to be continuously and self-compassionately managed, not eradicated. 

My sensory issues haven’t gone away. I still struggle with large, bright buildings, including supermarkets, shopping centres, airports, hospitals. But I’m finding new ways all the time to make my life manageable in a way that is fair and kind to myself.

So, here are the realistic and self-kind methods that I use to manage my sensory issues…

1. Pinpoint your sensory triggers

This might sound obvious, but it’s good to be clear on what your autistic sensory issues are. Autistic people often struggle with understanding and pinpointing our feelings. You may know you’re feeling distressed, but feel unsure about the cause. 

For many autistics, noise and uncomfortable textures are huge sensory triggers. For me, lighting and visual changes are the worst trigger. Before I knew about autism, I initially interpreted my sensory issues as claustrophobia, because it often set off in rooms without windows.

Later on, I realised the main trigger was actually the lack of natural lighting. I hated artificial, bright lights in any environment, even those with windows. I’ve also found that hot or loud environments can make me feel overstimulated. 

Through understanding my autistic sensory issues, I can take steps to reduce the harm. For example, if I’m going into a hot, bright building, like a GP surgery, I’ll make sure I remove my coat, scarf and any jumpers, so I’m not overheated. I’ll also ensure I sit by a door or window, so I at least feel closer to a low-stimulation environment. It sounds simple, but it’s something I often forget to do if I don’t consciously make myself do it.

If you’re unsure about what’s triggering you in an environment, think about what would need to be changed in the space to make you feel comfortable. It may be lighting, noise, texture, or even temperature.

2. Research and contact locations in advance 

Autistics are not known for our love of new places and situations. Whenever I have to go somewhere new, I’m especially worried about whether it will cause sensory overwhelm. Will I be able to use the bathroom? Will I even be able to enter the building? The uncertainty can be very anxiety-inducing.

Planning ahead can help you to feel in control. I always research the building in advance, looking at as many images on Google as possible.

For hospitals, I find AccessAble useful. This website shows detailed images of certain locations, including hospital wards and clinics, so you can see how accessible they are in advance. It also provides some details about how bright the lighting is, and whether there is a TV or a radio playing. 

Don’t hesitate to email the location beforehand to ask about entrances and exits, lighting and noise, or simply to let them know you might need additional support. If you’re not diagnosed, you can explain that you’re awaiting assessment or that you struggle with sensory issues.

3. Request reasonable adjustments

Learning to advocate for yourself is often easier said than done. Autistic adults already struggle with social situations, but having to assert ourselves is even harder. You may also have trauma from bad past experiences of speaking up about your needs, or fear around authority figures.

Speaking up about my own needs has been challenging. Before I knew about autism, I found it difficult to explain what I was struggling with. It’s hard to help people to understand why you’re so adverse to bright lights (or loud spaces, etc). I worried I’d be interpreted as “weird” or “difficult”.

However, I’m gradually learning that I am not a burden. It’s okay for me to express what I need to cope with sensory issues. For several years, I couldn’t attend doctor’s appointments because of this issue. Feeling confident to say what I need and know that my requests are not unreasonable has helped me to attend again.

If you don’t feel comfortable verbalising what you need, you may find it helpful to email your GP surgery in advance, as well as preparing a hospital passport.

4. Use helpful tools 

Graded exposure therapy warns against the use of so-called “safety behaviours”. These are described as behaviours that people struggling with panic attacks use to cope. They are viewed as maladaptive, and need to be discouraged as the person may rely on them to cope with stressful situations. The argument is that the person needs to be able to cope with all situations, and that over time their “fear” will subside.

For autistic sensory issues, the danger of this ethos is self-evident. For autistic people, these sensory and social issues will never just “subside”. Autistic “safety behaviours” are not maladaptive, they are self-regulating.

Why are autistic people often told that we are the ones who need to change as part of our mental health treatment? Surely, society needs to meet us halfway, at least some of the time?

I personally ignore the safety behaviour advice – if there’s a tool that helps you manage sensory issues, use it!!! If you struggle with noise, invest in some noise-cancelling earphones. If, like me, it’s bright lighting that gives you the ick, some people find wearing specialist tinted sunglasses helpful.

Don’t be afraid to ask for help either. If you have a close family member, friend or carer who can help you through a sensory challenge, don’t feel you have to force yourself through. Sometimes I struggle to lock the bathroom door in brightly lit public toilets, so my Mum will stand outside the door for me.

5. Stimming

Again, I ignore the safety behaviour stuff here. If I need to stim, I do it. Obviously, this can be hard to do in public, as many neurotypical people don’t understand.

Whatever stim you like, you should never feel ashamed of stimming. Still, it’s easier said than done to build confidence to stim in the neurotypical world. 

Personally, I really like rocking, so sometimes I will listen to music as I rock. That way, people just see me swaying to the music. Fidget toys are also becoming a more “socially acceptable” stim, so take plenty with you.

6. Use alternative options

Graded exposure therapy also warns against avoiding anxiety-inducing situations. Again, I call bullsh*t for autistics. Our lives are already filled with anxiety day-in, day-out, not to mention how our overwhelm can lead to meltdowns and shutdowns.

If there’s an easier option, it’s okay to take it. If there’s a smaller food shop that’s more expensive, but you can cope with the lighting and noise okay in there – use it! If you can order online – do it! If traveling in first class is an option and it helps you – do it!

Don’t make yourself ill going to places that don’t help you! I spent years trying to force myself into supermarkets that just made me feel ill, and it never got better. If there’s an alternative that works for you, don’t feel pressured to move out of that space if you’re not comfortable doing so. 

7. Surround the sensory event with positive experiences

When I’m ill, tired or down, it’s much harder to cope with sensory stimulation. Whilst sensory issues never just “go”, I find them easier to deal with when I’m in a relaxed, positive mindset.

For example, there’s a toilet at my local Caffé Nero that is very bright and enclosed, so it always makes me anxious and overstimulated. 

But the coffee shop itself is very relaxing, with dim lighting and cool ventilation, which calms me. I find after drinking my favourite hot chocolate and writing a story on my computer, it’s easier to cope with the negative emotions and sensations that come with sensory issues.

It’s still uncomfortable to use that bathroom, but I feel able to cope better with the sensory discomfort, because my mind is otherwise balanced. So, where possible, if you have to go somewhere that triggers sensory overwhelm, surround yourself first with positive things that boost your mental wellbeing.

8. Leave if it gets too much

Any form of avoidance is frowned up in exposure therapy. But again, I’ve found forcing myself to put up with autistic sensory issues just makes it worse.

Why? Because they don’t go away!

This is arguably TMI, but I once had to stop mid pee in a hospital toilet due to sensory overwhelm – and that’s okay! It wasn’t ideal, but I sorted it out eventually. Don’t beat yourself up if you can’t cope with an environment. You might be able to cope on a day when you’re not as stimulated. Or it might just be the wrong environment for you. Either way, it’s okay to walk away.

9. Be kind to yourself and recognise the cause of your sensory issues

The more you pressure yourself, the more you blame yourself. The more you blame yourself, the worse it will get. Give yourself space and time. Don’t rush. Don’t pressure. Don’t be unkind to yourself. My sensory issues slip into panic when I feel like I’m being forced to just “get on with it”, so don’t be tempted to do that to yourself. 

Panic subsides when you acknowledge the reality of your sensory issues. They are an almost physical pain in certain sensory situations. They are real. They will not “just go away” if you “try hard enough”. Your sensory issues are real. Validate yourself, even if the world won’t. It’s about managing autistic sensory issues, not overcoming them.

10. Use a holistic approach

One of the biggest hurdles with autistic sensory issues in adults is that many of us went undiagnosed for so long. This meant that we were given “treatments” for anxieties, phobias and personality disorders that didn’t explain our life challenges. Many of us then internalised those “treatments”, believing we were not good enough, as we didn’t seem to be “getting better”.

If you’ve been made to feel you have an anxiety issue that you can rid yourself of, it’s easy to get very trapped with your sensory issues. Trying to “overcome” them became my life. I lost sight of all the other things that mattered to me.

I started to manage my autism sensory issues better when I felt more at home with myself, through discovering my special interests, embracing my creativity and building my confidence. This is why I stress giving yourself time and space to breathe and be yourself.

Don’t force yourself into places or situations that cause sensory distress. Focus instead on boosting your overall mental wellbeing. When that anxiety lessens, it will be easier to manage your sensory issues in a way that suits you. 

Autism sensory issues in adults don’t go away, but they can become more manageable. That’s why advocacy is so important. The world needs to learn to accommodate neurodivergent people, instead of us constantly having to put ourselves into painful sensory and social situations just to live our lives.

Neurodivergent people have a completely different way of interfacing with the world. And that’s okay! In fact, it’s more than okay. It’s wonderful! We should be respected just as much as any other group.

If you do have to use exposure therapy, adapt it for neurodiversity

I want to be clear that I’m not disregarding graded exposure therapy. If you’re struggling with something due to a fear or phobia, it can be a useful tool to build gradually towards your goals without pressuring yourself to do it all in one go.

I’m also not saying it’s good to always stay in a comfort zone. Train stations, hospitals and supermarkets are nightmares for me, but I still try to use them as much as I can. The difference is, now I’m not beating myself up if I can’t do it in the same way as other people. 

If you do have to use graded exposure, I would strongly recommend adapting it for neurodiversity. For example, if you’re working on social anxiety, you might feel pressured to visit a crowded space in a shopping centre. But this isn’t something most neurodivergent people would usually like.

So, instead, adapt it for something that feels right to you. You might instead want to build towards joining a social group related to your special interest, or to visit a busy location with your noise-cancelling earphones firmly in place. Remember: this is your world as much as anyone else’s. It’s okay to adapt mental health strategies to suit your needs.