Please don’t tell me everyone is a little bit autistic….

B4986163-FE07-42B0-96C2-581D9A761176I hear this phrase frequently “Everyone is a little bit autistic”.  Usually it comes up when I try to explain the challenges two of my children come up against because their ASD is like mine and on the surface not obvious and also when I have told others of my own very recent diagnosis.

Maybe people say it in an attempt to emphasise.

Maybe people say it in an attempt to belittle our struggles against an invisible force.

This particular statement often from well meaning individuals frustrates and offends me because in reality, no everyone is not a little bit autistic.  Being autistic is not a lifestyle choice, it can come with gifts but for nearly every single person who is truly autistic it means living with and battling daily obstacles that usually put us at a definite disadvantage to those considered neurotypical.  To have a diagnosis of autism someone has to experience difficulty in numerous areas of their lives, there is no little bit about it.

In my experience thoes considered high functioning ASD like myself; I hate the term but use to demonstrate a thought,  where ASD it truly a hidden disability suffer far more than most people realise because they know they are different because you can’t see their disability, because they long to belong and share in what is a predominantly neurotypical world, yet these are the individuals that the ignorant refer to as a little bit autistic. For someone considered low functioning like my youngest child who’s ASD is visible and to the ignorant they are considered severely autistic they appear to be spared thoes feelings and struggles of being different and not belonging.

For me my challenges include an inability to follow a conversation within a group, I assume due to my information processing delay and differences, my brain is wired differently, no matter how hard I try after 36 years I still get lost in seconds in a group situation.  I end up saying something in response to several comments earlier that makes me look silly or hours later I suddenly want to make a comment and contribute but the moment is passed, people assume I am not interested in what they have to say, but I am, it just takes me that long to get my head around everything, have you any idea how frustrating that is?  It also makes me feel left out and alone even though I was there physically!

I have an uncanny ability to sit in a meeting listening carefully to what everyone says, even taking notes but at the end of the meeting I will have come to a completely different conclusion to everyone else, ask me to explain my rationale and then others can see how I got there, usually because I instinctively take everything literally but this causes lots of problems because I end up confused, I will read the minutes and struggle to believe I missed all the information I did, I also often realise on reflection I am taken out of context.  I speak the same language as everyone else in the meeting but somehow I am as lost in translation to them as they are to me.

I take in little pieces of information and build them into bigger pictures, meaning the end picture is not always clear until I have the majority of detailed pieces and then assembled in the right order in my mind.  I have learned to play back a days events in my head and usually on reflection I can build the same picture as everyone else did, but someone who is  neurotypical has the ability to start with the bigger end picture, then they focus on the details, meaning they don’t have to work anywhere near as hard to make sense of something new.  This goes not just for information, it applies to experiences too.  Meaning I often feel totally exhausted, irritated and overwhelmed at the end of a day full of new things.  Yet somehow I need to wear a smile and pretend it was all great.

I take my camera almost everywhere I have a thing for taking pictures, I also think in pictures and remember in pictures, any event in my life the good the bad and the awful I can recall in pictures down to every minute detail from a ridiculously young age. I see it as both ASD’s biggest gift to me but also biggest curse.  It is lovely to instantly remember my children as babies to see their faces, to smell that unique scent, to hear the cute baby noises, to be able to see and hear the voices of someone I loved who is no longer here.  I can bring it all to mind in an instant vivid as if real. There are some pictures my brain stores I would give anything to forget, because they cause pain, shame, anxiety and sadness.

I am certain my youngest child has the same ability, the ability to play back images in their mind like a cinema, I catch them laughing away at nothing there, or occasionally they just come over all sad and teary.  A professional told me it was involuntary and related to their disabilities. What would they know?  My child will often say what was so funny or sad and usually it is something that happened before. I put a huge amount of effort into trying to give this child the happiest of memories and to shelter them from any pain or hurt because I dread them being trapped with painful memories.

Photography it is not an obsession as it may seem to some, it is my biggest tool and a hidden coping strategy.  It acts as a tool because later I can look over my pictures, they help me process my days, because although I store pictures of everything in my mind there is a bit of a lag between what has just happened, if I have had a busy full on day at the end of it I find myself feeling lost, pictures help me make sense of the immediate past. Being able to take pictures can really help me process information because it lets me capture the fine details.

I live with a sensory system that interprets things differently to the majority of people, I am always too hot.  I sweat buckets. I hate it.

I long to have nice hair but can’t bear for anyone to touch it. It hurts, it feels wrong, it takes weeks for it to feel like mine again. It takes me months to find the courage to brave the hairdressers.  It has been over a year since the last trip for a trim.  I have been trying for weeks to get the voice in my head to convince me I can do it.

I like particular clothing, I haven’t worn anything other than jeans for the best part of twenty years! When I find a top I really like I will buy another three the same I wear them until they fall apart because they feel right.  I long to wear smarter, prettier clothes but again they feel wrong, they make my skin crawl. They send my anxiety skyrocketing, so I go around looking scruffy.  I am hugely thankful that some take the time to be a friend despite my appearance.  I avoid parties, I own one going out top, I can stand to wear for a few hours with my jeans, if the occasion was to call for more formal clothing I just wouldn’t go.  I will hopefully graduate in a few years time and what an earth I am going to wear already weighs heavy on my mind.  The thought of just getting my certificate posted out appeals hugely but I want to inspire my children so want to set them an example to aspire to.

I struggle with the texture of foods, I like very plain food. Some textures and smells have seen me throw up. In particular I struggle severely with fruit and vegetables. I get really stressed if I order food without garnish and it comes with, those tiny bits of greenery will taint the tast of all my food just by being on the same plate.  As a mother I mask my food issues as best I can in front of my children, though they all have their own sensory food battles.  One of my children at the age of eight has such severe sensory issues around their mouth they are yet to conquer eating solid food, progress is so slow, yet I fully understand that childs torture and torment.  I would love to go out for a meal and order straight off the menu without having to ask for accommodations.  I dread getting asked to a friends to eat, I don’t want to appear rude but I really will go into full scale panic if my worse scenario happens and I am presented with something I can’t eat.

I have to have something in my mouth every waking minute of the day, I use gum as it is socially acceptable and easily hidden by pushing to the roof of my mouth, before gum I bit my nails, chewed my clothes, fingers, pencils, two of my children have the same issue, chewing is calming, it also helps with information processing somehow.  I get really annoyed when my youngest child’s school take their chewy away because they think it stops them talking, they don’t understand that my child is unlikely to talk if all they can think about is the need for sensory input!

I have huge issues with sleep.  Insomnia is my own and my children’s biggest nemesis.  I frequently feel exhausted but just can’t sleep.  I find it impossible to shut down. I struggle to get up in the morning. My body clock for years now wants to sleep from 4.00am -12.00pm! Absolutely impractical as a parent and a student! All my kids struggle with sleep all take melatonin with a varying degree of success. It means they start their day exhausted too, it puts us at a disadvantage in education and life no one learns well when tired, no one can be their best when not firing on all cylinders.

To most I appear normal, perhaps a little eccentric, most unless told don’t know I have ASD that is because over the years I have learned strategies to juggle the differences ASD has given me, I am constantly adjusting and adapting to try and make things easier for myself and my children.

When someone says “Everyone is a little bit autistic” please stop and think how hard those with ASD have to work beneath the surface.

Ask which part of autism they would like?  For any perceived gifts there are tenfold pitfalls.

Thoes with autism didn’t choose this fate, I am yet to meet anyone with ASD who is not doing their best or trying their hardest. Remember that and don’t mock, don’t belittle our struggles.

 

 

 

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