Living AuDHD

Autism and sensory issues go hand in hand – I’ve been plagued by sensory issues since I was born. As a child, I’d scream when the BBC titles theme came on, or cry at the sharp sound of the hoover. In adulthood, I’ve struggled with bright lighting in supermarkets and hospitals.

Sensory issues in adults and teens are often linked to autism and neurodiversity. What makes it worse is that many of the “solutions” (said with an eye-roll) are set up for neurotypical brains. For autistics, they can actually make things a whole lot worse.

Traditional psychological techniques, such as exposure therapy, can lead to feelings of shame and extreme physical discomfort for autistics. It forces us to enter situations our brains are not equipped to cope with – and we are then made to believe we just need to keep forcing ourselves through it.

This is backed up with evidence. Studies show that some autistic children don’t experience habituation to sensory issues as their neurotypical peers do. In essence, autistic brains seem to take longer to process sensory information and are unable to “tune out” sensory stimuli as others can, contributing to sensory overwhelm.

(You can read more about the science behind these issues in this fantastic blog post by Jillian Enright.)

If you’re struggling with autistic sensory issues, you’re not alone. Whilst sensory issues don’t disappear, there are self-compassionate ways that neurodivergent people can manage them.

In this post, I’ll…

• Talk through my experiences with autism and sensory issues
• Explain why graded exposure therapy made them so much worse
• Cover why the shame spiral is so harmful for autistic people

Disclaimer – Everyone is different

Autism is a spectrum and no two autistic people will have the exact same experiences of sensory issues. I personally struggle with lighting the most, but for you it may be the texture of food, the feel of clothing or loud noises. Equally, if you don’t think you’re autistic, but have ADHD or Sensory Processing Disorder, you may also find this guidance helpful.

This blog post is based on my own personal experiences and what has worked for me. Though I have lived experience, I am not a trained medical professional. If you’re concerned at all about your sensory experiences, it’s always important to seek medical advice from your GP first.

My lived experience of autistic sensory issues and exposure therapy

I don’t believe there is any one autistic experience that is “more challenging” than others. Whether diagnosed at an early age or self-diagnosed later in life, we all have our different struggles.

In my personal experience, being undiagnosed created some extra challenges for me. For one, when my sensory issues became more difficult to manage, I had no idea what they were, and the treatments provided by my psychologist were aimed at neurotypicals. 

As a child, I struggled with the noises of the hoover and hand-dryer, as well as the texture of meat and certain vegetables. I dreaded PE, when we had to run around the school hall with bare feet. This was the same room we ate lunch in, and the floor often still had remnants of food or other stains on. I cringed at the feel of the dirt gathering on the soles of my feet and under my toes. The smells of cooked lunches merged to create a sensory overwhelm that left me feeling sick to my stomach.

I never had the vocabulary at this age to describe the sensory issues I was experiencing. When I left formal education to be home-schooled at age 9, I was removed from a lot of my sensory triggers – particularly as I struggled to leave the house sometimes. 

However, the issue reared its head again when I began branching out into the world by doing new things. This time, though, it was lighting I struggled the most with. I couldn’t cope with sports lessons as the gym had this bright orange light that left me feeling like my soul had been drained from my body. The same with the bright white lights in supermarkets and GP surgeries and hospitals. 

My psychologist at the time told me I was experiencing panic attacks and recommended I use graded exposure therapy to overcome them. I initially liked the idea, as it encouraged me to go against my instincts. If I felt uncomfortable in an environment, I needed to stick it out, rather than leave.

I was told this would control the issue, and over time, my anxiety would ease and I’d feel comfortable in these spaces. Over ten years later, I’m still experiencing those same issues. 

During that time, I tried over and over to fight my sensory issues with graded exposure therapy. I started off small, entering a space that made me anxious for a short period. But I was never able to stay longer than a matter of seconds.

On the rare occasions I did manage to stay for longer, the anxiety never seemed to dissipate. Even if it did, I still felt uncomfortable in the space. I wanted to be anywhere else. 

I struggled to pinpoint exactly what I felt “anxious” about. I thought it was claustrophobia, then agoraphobia, then a panic disorder. Yet none of these seemed to fit. Some small spaces I was okay with, some big spaces I was okay with. Sometimes I didn’t even get panic symptoms. No racing heart, no shaking hands. Just…bleh. It felt more uncomfortable or even painful to be in bright spaces.

Eventually, I began to pinpoint my triggers to bright lighting, loud spaces and heat. The worst environments had an amalgamation of all three. (Public toilets were a particular nightmare!) Yet, many of the people on the panic forums I visited didn’t experience this.

When I learned that autistic people experience sensory overwhelm, with lighting being a trigger, this was a big realisation for me. I would often find myself saying, “I have that issue autistic people have, but I’m not autistic”.

Strangely, I kept saying that more and more often. Finally, I realised that my years of trying to overcome my struggles with bright lighting and other sensory issues might not be as anxiety-focused as I thought.

Unfortunately, by this point, a lot of damage had been done. Trying and failing to overcome my “fear” of my sensory issues made me feel incapable and, in fact, made it harder for me to do the things I wanted, not easier.

Exposure therapy made me internalise my issues as a personal flaw that I alone had responsibility for, a mental health issue that I alone had to unweave. For years, I was a coward and a failure in my own eyes.

Through accepting and embracing myself as autistic, I’ve been able to manage my sensory issues in a way that’s more realistic and helpful for me. I see my sensory issues as a natural part of me that I only need to manage (and request support from others!) so I can live a fulfilling life.

They haven’t gone away. But I don’t hate myself for having them, and I can put things in place so I can still do most of what I want to do. It’s an ongoing process and there are still things I struggle with, but I am much kinder with myself and my life is finally opening out.

Exposure therapy and the shame spiral

Shame is not an unfamiliar emotion to autistics. From socialising to intense special interests, we’re often made to feel our way of being is “wrong” and we need to “correct” ourselves to be like neurotypical peers. Similar to ABA therapy, graded exposure therapy can create harmful feelings of shame in autistic people. 

Exposure therapy works on the idea that through repeated exposure to the trigger, the anxiety will ease. But for autistics, much of our anxiety comes from the fact our genuine issues are not recognised by neurotypical society and we’re simply expected to “just get on with it”. Any fear and panic I experience is due to not being able to leave a situation that is deeply physically uncomfortable for me, not an irrational fear. 

Undiagnosed autistics are often told, “it’s just a panic attack, keep going and the issue will improve.” Plot twist: it never does. Instead, we’re left feeling deep shame for our apparent inability to overcome our sensory “fears”. This, in turn, makes us feel bad about ourselves.

Our anxiety also increases, as we have less control over sensory issues. We then end up doing less and less. This makes our lives smaller. And the cycle repeats.

Meanwhile, if we treat ourselves with kindness, respecting the reality of our sensory issues, our lives can improve. The more we relax and build our lives, the better equipped we are to deal with sensory overwhelm.

That means not forcing yourself into sensory environments that make you miserable. That means not blaming yourself if you can’t cope with sensory overwhelm sometimes. That means using all the tools at your disposal to help you through challenging environments, no matter what the guidance says. 

Moving past shame with autism sensory issues

In my experience, learning about autism and sensory issues helped me to understand myself and process my needs better than any therapy. Finally, I could think about my sensory issues in a way that made sense – and also allowed me to be kind to myself. 

Knowing about sensory issues doesn’t make them go away, though. I still struggle to manage my daily routines due to autistic sensory issues. I have to plan my life with them always in mind. However, managing autism sensory issues is a lot better than brute forcing yourself through them.

Over time, I’ve learnt what worsens my sensory overwhelm, and I’ve developed strategies that work for me. I’ve also learnt to be kind to myself when nothing is working.

In my next blog post, I’ll cover some of my strategies for managing sensory issues without any graded exposure therapy. If you like my blog, feel free to follow me on Facebook, Instagram or LinkedIn.