Sensory Survival: Living with hypersensitivity, being overwhelmed and experiencing meltdowns as an autistic adult
So here we are in Autism Awareness month – the one month out of the year where more of the general public take an interest and are more open to learning about Autism and Autistic’s lives.
I herald it. It is a great opportunity for both neurotypicals and neurodiverse to come together and openly discuss what makes us different and how we can all live together in this wonderful world of ours.
What I want to explain to you today is a first person’s viewpoint of sensory hypersensitivity, overwhelm and meltdowns.
Our sensory sensitivities wield a great deal of power as they can push us to overwhelm and meltdown as well as bring us an abundance of joy. There is also hyposensitivity in a sensory area such as having a very high pain tolerance or not being able to smell strong odours.
The more I have learnt about Autism, the more I have recognised and understood myself and aspects of my instincts that I didn’t before. I have always been classed as ‘highly sensitive’ to pain and physical contact. I struggle with bright lights and noise, I hate swaying or spinning motion, I cannot cope in big crowds where there is a lot of competing noises and my sense of smell is often overpowering.
When someone says that they have a sensory sensitivity it is a common misconception that they mean that their awareness is just more acute, more focused. The reality of sensory sensitivity is that the sensory input is so greatly intensified that it can become all-encompassing and overwhelming in a short period of time, unless the person is able to take measures to reduce the overwhelm or remove the offending sensory input. It often causes the person experiencing it to not be able to take in any other input at that time or think of anything other than the stimuli that is overwhelming them.
Some autistics that have a hypersensitivity to touch can be caused physical pain when they are touched; no matter how lightly. Their brain misinterprets the signals from the touch and causes the pain reaction.
When I am in a crowd; even if it is just in a shopping centre, it feels like the noise is so loud and imposing that it is all I can think about and feel. It is like the intensity of the world has been turned to its highest setting and it feels like I have dozens of people in my personal space; all talking loudly at the same time and I am trying to understand what they are all saying. This is the start of overwhelm. It feels like my brain is being squeezed and all of my muscles tense up. My heart races fast and my breathing quicken. At this point I lose the ability to think straight and my thoughts sound like they are overlapping and nonsensical. This is when the fight or flight response kicks in and everything in your mind and body are screaming at you to run. To get out. To get away from this stimuli as fast as humanly possible. The other side of this coin is the fight mode; where you are so desperate for the stimuli and all of the sensations you are feeling to stop that you lash out and push, kick, scream, anything in order to make it all stop.
Overwhelm can happen with any sensory sensitivity; whether it be sound, taste, touch, vestibular, proprioceptive or interceptive. All of which are triggered in different ways in correlation to the individual’s sensitivities.
Depending on how your anxiety and sensory sensitivity levels are on a given day, the speed of overwhelm occurring differs. If your levels are high; overwhelm will occur much more quickly than if your levels are low.
If you are unable to self-regulate or decrease the overwhelm, then a meltdown can occur. Meltdowns are often mistaken for tantrums in children as they will throw themselves around, scream, cry or lash out much like they would during a tantrum. The big difference between the two is the cause of the outburst. A tantrum often occurs because a child is not getting their way whereas a meltdown happens because the child is so overwhelmed that the fight or flight response has kicked in and they have not been able to self-regulate to calm themselves or be removed from the stimuli. It’s a desperate, anxiety ridden experience and the child or adult suffering through it has little to no control over how they are feeling at that moment because their survival instinct of fight or flight is in overdrive.
I recently experienced a meltdown, a relatively mild one and it was an exceptionally frightening and distressing experience. I was overwhelmed and was unable to remove myself from the overwhelming stimuli. I was stimming to try to self-regulate but it wasn’t working.
Suddenly it felt like the walls were closing in on me. My head was spinning, I couldn’t think straight,I started hyperventilating and I could barely talk. I felt completely helpless to these feelings and I just wanted to climb out of my skin and run away as fast as I could. I sobbed and had no idea why. I had no feeling of panic but it felt like my whole body and mind were screaming, though I couldn’t understand what they wanted or how to make it better.
It was a sobering experience as it reminded me first hand of what my son and all other autisticchildren and adult’s experience. It feels nothing like a tantrum when you are living that moment yourself.
Once overwhelm or a meltdown has passed, the person who has experienced it often feels completely drained of energy. An accompanying headache is also common as is the lingering feeling that everything they are experiencing is too much for them to handle. They often need to hide away from the world to allow their sensory system levels to return to a much lower state before they can attempt to be exposed to any overwhelming stimuli again.
There is a phrase in the autistic world which is ‘social hangover’. This is when the autistic has socialised and, although they may not have reached a high state of overwhelm or meltdown, they need to rest and give themselves self-care in order to recover from the social event. It feels very much like a sensory hangover.
There are different techniques and apparatus that can be used to help calm a person who is experiencing overwhelm or a meltdown; a dark, quiet room with a light projector (that projects swirling colours or an image on the ceiling or wall) helps as it removes most of the stimuli from the outside world and watching the peaceful, flowing lights or colours helps.
Other good tools are bubble tubes or bubble walls; watching the bubbles float and bounce their way to the top of the tube or wall is very calming.
Another commonly used tool is noise reducing headphones or ear plugs that will greatly decrease the level of auditory sensory input that they are experiencing.
One thing is imperative; NEVER, unless there is literally no other option available, ever restrain an autistic whilst they are in a state of fight or flight, in overwhelm, in meltdown or any other time, to be honest.
One thing that is very very common in autistics is that we abhor being restrained or held against our will. All this will achieve is causing a great deal more stress, anxiety and overwhelm to the individual and if they are not already in meltdown; this is a sure fire way of causing them to meltdown.
One technique that is very effective, I have found with my son, is using a sensory diet at home as well as seeing an occupational sensory therapist once a week.
With this, the individual does specific exercises or activities that reduce and calm their sensory system. If this is done every day; especially before a social event or a situation where they will be exposed to overwhelming stimuli, it will enable them to be able to cope for longer and will lengthen the time that overwhelm takes to occur.
Living with hypersensitivity can be hard and it can greatly limit the options you have when planning activities, social events or even a trip to the shops. However; there are many wonderful benefits to living with hypersensitivity. If it is in your visual sensory system, you can get lost in the beauty in the world; such as trees, art work, sunsets etc. If it is auditory, you can find true joy in music or be able to hear a greater distance with clarity. With taste you can pick up even the lightest ingredient in a meal. You get my point.
As with most things in life, there is a balance; the Yin and Yang so to speak. When you experience the world with sensory intensity, you have both the ability to feel ecstatic joy at the simplest things as well as be crushed by overwhelm.
I, personally, would not want my sensory sensitivities to be dulled or reduced. A walk in the forest brings me such peace and happiness; simply by looking at the trees and the different shades of green in their leaves, the fresh scent of the woodland and listening to the birds and squirrels living their lives; it’s a magical experience that I would never want to be without.
So please do not focus on the negatives. Yes, they can have a big impact on your or your loved one’s life. But the negatives can be lessened with techniques or tools. They can be supported by knowing situations or stimuli to avoid, by using a sensory diet or using items that you can transport with you such as noise reducing headphones or tactile toys (like Squishies etc.).
The thing to focus on is the happiness it can bring; go to the places or have the experiences that bring you joy and comfort. Celebrate the things that you can feel that the majority of the population cannot and do self-care activities often to keep your sensory system calm.
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By Jo Richardson