Recently I have been struggling with my condition and I wanted to document a few things about autistic meltdowns and masking to help people understand.
Autism is not an illness..
It means the brain works in a different way from a neurotypical brain. It’s something you are born with. If you’re autistic, you’re autistic your whole life. Autism is not a medical condition with a “cure”.
For people on the autistic spectrum, the world can be a bewildering place. With oversensitive sensory systems, they battle to process the maelstrom of information flowing into their brains. Often the result is sensory overload, leading to signature behaviours such as tantrums, anxiety and social withdrawal.
Meltdowns
Meltdowns are similar to the fight or flight response. When an autistic person is having a meltdown they often have increased levels of anxiety and distress which are often interpreted as frustration, a ‘tantrum’ or an aggressive panic attack.
A meltdown is an intense response to overwhelming circumstances to that individual – sometimes a complete loss of behavioral control. People with autism often have difficulty expressing when they are feeling overly anxious or overwhelmed, which leads to an involuntary coping mechanism.
During a meltdown I personally have to withdraw from any social interaction and need complete silence if it is really severe – this can last for hours.
Certain meltdowns can be the opposite and I need to distract my thoughts as they can be very scary and confusing. My coping technique for this is to blast music (usually one song on loop) in my headphones until my thoughts become manageable, this can also go on for hours.
If I feel things are becoming overwhelming I will edit and create images on my phone – again this can last for hours on end. Creating art gives me a positive hyper focus which really helps.
During in a sensory overload my feelings fluctuate from self loathing/hate and internal rage, to suicidal ideation.
To publicly go out I need to take medication which slows my thought process down as I feel I naturally try to take in to many details of my surroundings which leads to sensory overload and meltdown. Depending on the reason to go out, I will also drink alcohol to slow down my thought process.
I have masked this for many years and not many people who know me know or understand this of me.
I can appear very confident but this is all part of my mask and is short lived. If I leave the house on a Monday I may not be able to leave my bedroom for days (weeks sometimes) after – as It leads to a burnout.
I also restrict my communication with others to just text and do not answer the phone or door.
Things that can trigger an autistic meltdown –
- Feeling trapped
- To many instructions all at once
- Change of routine
- Something not in its place
- An order being wrong eg. Food takeaway
- Certain times of the year eg. Birthdays/Christmas
- Demands
- Crowds
- Lack of communication
- Masking autistic traits for to long
- New environments
- Sensory overload or under-stimulation
- Difficulty regulating emotions
- Can’t identify emotions
- Being patronised
- Physical pain
- Lack of sleep
- Struggling to understand what someone is communicating
- Can’t regulate body temperature
Masking
Masking is the suppression of one’s true self by neurodivergent people. It is known by many names – camouflaging, compensating, adaptive morphing.
Social Masking is where an autistic person acts in ways others might consider “normal” in order to be accepted by them.
As far back as I can remember I have masked to fit in. I have always struggled to understood why people act the way they do and why the world is the way it is?
I feel my interest in psychology and human behaviour stems from this – to fit in you need to be able to understand why people act the way they do.
After my recent diagnosis of autism I have really tried to be open about how I am so that others can understand me (and my condition) a lot better – This in itself has caused so many issues.
I try to articulate myself in a way that is very simplistic, so others will understand, but I find it extremely difficult when people don’t – leaving me feeling even more isolated.
To have a late diagnosis in my early forties has also caused many issues. I have looked back over my life to understand situations and why they happened and how my condition was never established. How certain struggles I have gone through could of been avoided if I’d of known and also the emotional damage they have caused.
I have coped all through my life by masking, so now to try to unmask and be open has made me feel like I am having an identity crisis a lot of the time.
An identity crisis is defined as a period of uncertainty or confusion in a person’s life. This crisis occurs when a person’s sense of identity becomes insecure and unstable. An identity crisis usually occurs when there’s a change in a person’s life.
Masking can be –
- Constantly monitoring myself
- Taking medication/alcohol to cope in social situations
- Bottling up thoughts and feelings
- Hiding distress towards certain sensory stimuli eg.loud noises
- Socialising when not wanting to
- Practicing conversations and facial expressions
- Cancelling plans last minute
- Putting on an act – feeling overwhelmed and anxious but hiding it to appear calm and at ease
- Talking more or less to mask anxiety
- Copying others body language or facial expressions
- Taking on the persona of another person
- Leaving early or going to the bathroom to avoid meltdown
- Forcing myself to make more/less eye contact
- Overthinking how I appear in conversations
- Forcing myself to pay attention and focus on a conversation but zoning out
- Hiding behaviour that is socially unacceptable
There is obviously far more to write on this complex condition and I have only just scratched the surface in this small blog. I just want to keep spreading awareness as I learn more and hopefully help other people going through the same or similar situations with my story.
Society as a whole has a long way to go on understanding and accepting Autism, but hopefully by talking openly about it, I can bring a little bit more awareness and help break the stigma.
I want to leave with something I read on a post on one of the many autistic profiles I follow on social media which really stood out to me –
“A change that can seem minor or insignificant to a neurotypical person, can feel HUGE and overwhelming to an autistic person. Please forget about your neurotypical perspective or logic, it doesn’t apply”
Great blog mate.
It’s an interesting and informative read, particularly as your art sparks all sorts of thoughts in my own mind. I sometimes think to myself “ how do you come up with such a creation and what’s going on in your mind at the time?”
Not ideal, but does your best work come from difficult moments?
Creativity is a gift, keep creating!
Catch up soon
Paul
Hi Paul,
I’m glad you found it informative. Great question to.. I’d say my darker more complex pieces come from the more difficult moments. It’s funny, as when I look through my social media I can map my moods by the art that I produce. Sometimes I really try to force happy pieces out when I’m not to good because I believe in the power of thought – if you think and see positive happy things, then it reflects in your mood. This doesn’t always work in practice for me though. Negative or positive art, whichever it is, it still gives me focus to help me get through that particular moment.
Cheers for reading and the great comment.
Hopefully catch up soon and you can make it to my next art installation and get some of your amazing shots.
Take care
So proud of you Dez!
We’ve been good friends for many years and always had a great affinity.
People who know you don’t see the Autism, you’re just Dez ❤️
Keep being you! Talented, funny, witty!
Lots of love my mate,
Kate.
Thank you Kate, and thanks for reading ❤️
Hi Dez,
I finally got round to reading your blog and your bio. V interesting!!
You really do break things down and provide an in-depth explanation on what it truly means to be autistic. I completely understand why you encouraged me to read your blog as opposed to trying to explain it to me via our Instagram chat.
You wrote and explained the symptoms/conditions/experiences etc so well – Far better than any article on autism I have ever read. Whilst reading, I felt a deeper understanding of who you are / a greater insight of you as a person.
What I particularly liked was you saying (paraphrasing) that growing up, how many things could have been avoided IF you had been diagnosed sooner.
Wow, very deep and thought provoking. Kudos to you and thanks for sharing (“,)
Hi Deb,
Thank you so much for reading my blog and such a nice comment. I’m glad you found it interesting and informative ❤️🙏🏽✨
Dez as usual you seem to have covered so many different aspects, but am sure there is much more – so hope you will put it to paper at some time. Our friendship is important to me and over the last 3 years we probably could have written a book of texts! We all can understand to a point, but none of us can get inside you to.feel the intensity and your struggle, but on the outside Dez, you stand proud – a great father and person a lot of us look up to a great family member snd most of all you are loved….
Hi Kay, thanks for your continued support which I’m very appreciative of and definitely our friendship. Yes, we definitely could of written a book haha, and your always one of the first to get glimpses of my new pieces I create to.
Thank you for always trying to understand where I’m coming from.. much love as always ❤️
It’s your honesty and rawness in art and conversation that make you so amazing!
Thank you for spreading awareness and a greater understanding of autism. With these insights we can all strive to be more supportive.
Keep producing the amazing work that you do, Dez!
Hi Ashleigh,
Thank you for taking your time to read through and for your very kind words ✨
Wow, this really generates the “be kind” more than ever, knowing that autism is so hard to recognise if you don’t know the signs/traits , this triggered a sense of sadness that touched my soul, knowing in depth how you have struggled for many years on this level is astonishing just to get through a single hour never mind a day it really is the epiphany of struggling in silence l, I’m in awe of you and I will be going forward bearing these signs in mind whenever I meet someone new, just always be pure and kind because you really never know what some is going through. You’ve done an amazing job spreading this awareness, I’m glad you’re here and let’s keep going 💫🥰
Thank you ❤️