I needed to know one way or another, I wanted to know why no matter how hard I try or how far I come on life’s journey, why there are some things I seem to always find incredibly difficult or tricky to deal with and also why I appear to feel all emotions and feelings so vividly in full technicolor pictures in my mind, when I have long suspected and I am now learning not everyone else does.
I don’t like change, even planned for changes make me anxious and unsettled, I feel and see fizzy on the inside, like it feels if you put your hand in a glass of fizzy juice but beneath my skin, the closer the change comes the more energised the fizz becomes, I see tiny bursting bubbles in my head they cloud and burst over the other images that gather in my mind. All my hairs stand on end hyper sensitive to the lightest touch, they make the edges of the pictures in my mind look prickly and sharp around the edges, sometimes I feel physical pain, it is prickly like running a hard bristled hair brush over my skin.
Unexpected change makes me see and feel red, a burning searing scarlet sea of red, in my mind it resembles lava, in my body a burning heat starts in my stomach and shoots simultaneously down my arms, legs and up through my head, when I was younger I would lash out at others and myself, there are scars that act as a reminder to when I couldn’t regain control, it is only recently I understand why.
It is a fight or flight reaction.
Over the years I have learned that loud music, music played so loud that it deadens all other sounds and senses can help, I am never without a music source, my playlist and earphones. Music is my escape. I have go to songs, Fleetwood Mac’s “Go Your Own Way” , Meatloaf ‘s “Bat Out Of Hell”, Cindy Lauper’s version of “I Drove All Night”, Bonnie Tyler’s “Total Eclipse Of The Heart” and The Beatles “Let It Be” to name a few, thoes songs make the pictures in my mind return to clear images I can focus on, until I let the thought of change creep in again.
Walking to the point of exhaustion can help calm the anger and anxiety, somehow movement helps, I often have to suppress the urge to jump up and down or flap when frustrated, I am doing both internally though. I wonder if I ever flapped externally, I know I did the jumping a lot as a child. In my head I see logs burning, I can’t stop walking until they are all burned out and a white silk veil falls suppressing the last of the flames allowing a cool calm feeling to wash over me.
I find socialising and meetings exhausting, I manage o.k at the time, well I think I do, but it appears some friends and professionals had worked out I was on the spectrum so maybe I don’t pull it off as well as I thought I did. So far no one out of the handful or so people I have managed to tell have been shocked at the news.
I never feel I know when it is my turn to talk in a conversation and know I often appear rude as I butt in before someone else has finished, I think they have finished but they were just taking a pause, It is unbelievably confusing. I just don’t ever get it right. I have to really focus on the conversation and often loose track if it is a more than a 1-1 situation. It aslo doesn’t automatically occur to me to ask the other participant in the conversation a corosponding question, for example I have to consciously remind myself to ask someone how they are in return, or what they thought of an experience having already shared my thoughts, it is not I am not interested, I am I just don’t have the ability to do this spontaneously. This makes following a conversation tricky.
The physical fallout from meetings and socialising is complete exhaustion followed by three to four days of brain fog, sometimes the fog in my head is so bad, thick and heavy, I can’t safely drive my car or attempt anything that requires concentration or coordination and definitely not both together. It literally can leave me a prisoner in my own body. It frustrates me, I have still to find a way of clearing the fog, in the past I could sleep for twenty hours solid after a night out that didn’t involve alcohol.
I am a student and the brain fog affects my ability to study, process information and complete assignments. I now barely socialise during term time and try to avoid meetings clashing with assignment weeks, unexpected meetings are a big problem.
When I learn something new it is like building a picture or making a jigsaw, it takes me longer because I take in little bits of information at a time, but don’t process it in sequence so have to then rebuild the information in the correct sequence until the picture becomes clear and then once I can see the picture in my head I have got it.
I couldn’t get the hang of driving lessons, for weeks I tried and tried. I wanted to give up on so many occasions. I would master the clutch, but loose the ability to work the pedals and vice versa, and on top of that remembering to look in the mirrors, and signal at the right times, absolutely impossible. Let’s not forget my inability initially to ignore distractions like spotting wildlife or interesting buildings too! I remember clearly waking up in the middle of the night one night and suddenly all the pieces fitted, in the right order and were all together, in my head I could see the pictures I needed to drive in the right order. My next driving lesson I was able to drive that car in a way I had just about given up all hope of ever doing. My driving instructor said he had never seen anyone go from the disaster I was to actually driving a car in the space of a few days. I passed my driving test this year.
I needed to understand my inability to talk. I am 35 and really struggle to talk about feelings, I think I may struggle to understand feelings and thoughts, usually of things that are important. As I mentioned previously, I can see the words in my head all lined up but just can’t get them out. Can you understand how frustrating that is?
The longer it takes me to find a meaningful way of communicating the more the words build, they get bigger and the text bolder in my mind as if shouting to get out.
Sometimes when they do eventually find the way out they all come out wrong.
I went through years of counceling after traumatic experiences but it was a disaster because I couldn’t talk. The words just wouldn’t come out, instead I ended up with the traumatic images stuck in my head, constantly there every minute of the day and night for years, I attempted suicide on three occasions as a teenager because I couldn’t stand constantly reliving the pain. Eight years ago I tried a new therapy EMDR, it gave me my life back after more than two decades of being unable to process the horrific events of my past, the traumatic pictures finally faded away completely, I found freedom and peace.
It is only the last few years I have learned to take a huge deep breath and to challenge situations I am not happy with and to try and get my views across, I learned to do this for my children because if I don’t speak up for them who will? I often make a mess of it though because I don’t see things in the same light as others do. I can have a completely different perspective on a situation that no one else had considered! It can also be difficult because of how I learn and process information for me to see where others are coming from. It is absolutely hopeless finally getting the point of a conversation or meeting twelve hours later. This is a regular issue I have.
I would be interested to know if how I see and experience life is the same as others, because it is how my life has always been I never gave it a thought that everyone else wasn’t the same!
I get the impression my experiences are different because I am not neuro typical.
My ASD diagnosis is proving to be a quite a revelation to myself even if it appears to be unsurprising to those I have found the courage to tell.