ADHD, asd, autism, AuDHD, biography, bright lights, Chesterfield, complex case, COPING, CRISIS, Derbyshire, ECHOLALIA, LATE DIAGNOSIS, loud noises, MASKING, mental health, neurodiversity, overstimulated, resilient, STIMS, WOMEN
Living with Autism: My Journey of Masking and Acceptance
I am a forty-something, female living in the U.K, married with a daughter, I own my own home, I have been to university. I have held down a job. People who know me say they know me. Yet, there is one thing about me that most people do not know.
This is hard for me. Not a lot of people know about my diagnosis. Some people reading this and who know me will be saying, “NO” she isn’t autistic. She doesn’t look autistic, but ……
MASKING.
I mask; I mask everything. I was diagnosed with autism and ADHD at a late age. It was before it became trendy with the tik Tokers of this world. I have masked since being a child. I was aware of this, but I can’t do anything about it. It is not something you can reverse easily.
I watched people and how they acted. I mirrored them. I watched what they would say in situations. I mirrored them. I thought what I saw on television was how people acted in real life, so I mirrored that.
I practiced conversations in my head before actually speaking. I have a library in my head for how to act and what to say. I was not being me; I did not know who I was, still don’t.
Some women put a mask of makeup on before they leave their bedroom. I had to put on an entirely different me. I was a bubbly, friendly, helpful, clever girl. I seemed to grow up with no social anxiety, or so my exterior would have you believe.
OVERWHELMING.
Inside I was exhausted, both physically and emotionally, scared and alone. Music was my friend. Everywhere I went, my headphones and Walkman went with me. Here I can retreat from all the thoughts I had. Rapid thoughts of trying to interpret the overwhelming world around me.
I have always had friendship groups around me. Yet, nothing has lasted throughout my entire lifetime. I have acquaintances—people I recognise with whom I can have those well-rehearsed conversations. I questioned why anyone would want to be friends with me. I didn’t even want to be friends with myself. I felt false and like a fraud, as someone on the outside looking in.
DIAGNOSIS.
When I was diagnosed with autism and ADHD, it is now known as AUDHD. I was asked how I felt about the diagnosis. I answered relieved. But, I have a head full of questions. Questions I am still trying to find the answer to, why was this not found before, when I was younger. If I had been diagnosed at a younger age would things of been different. Would life of been easier.
I was diagnosed at a late age. At the time, I was in a committed relationship and had a fantastic job. I also had a teenage daughter. I had a nervous breakdown. I experienced audio and visual hallucinations. I imagined a tall bald man who wore a long purple coat living in my house. He followed me around and even spoke to me. The problem was that no-one else could see or hear him. This led me to the crisis team in my local area, I was pumped full of drugs and counselling. The drugs got rid of my bald friend. Yet, the diagnosis led to my discharge from the crisis team. It also caused my discharge from the mental health team. I went from having all the help I needed to nothing. Here is your diagnosis. Off you go into the world.
DAY BY DAY.
I am learning more and more each day about my disorder; I giggle at my ‘quirks.’ My husband and daughter tolerate me and my ways. I stim (repetition of words, sounds, and physical movements). I experience what I call ‘brain farts.’ During these moments, I don’t have a filter on what I say or when I say it. I have echolalia. I repeat tv and radio adverts and children’s tv programmes. My husband and daughter torment me. All they have to say is ‘who lives at the bottom of the garden.’ I must sing the theme tune to the poddington peas. Along with ‘oh look its Mr spoon,’ I must sing ‘we’re off to button moon.’ We’ve followed Mr spoon and button moon. Do not get me started on the magic roundabout.
I get over stimulated in situations where there are bright lights, certain smells, loud noise, or too many people. In these situations, I freeze or shut down. There is too much happening, and my brain just can’t compute it. My brain chooses to either fight, flight, or freeze.
ADAPTING.
Masking in autism is a complex and deeply ingrained behaviour. It has significantly affected my mental and emotional well-being. Despite facing challenges, I stay resilient. I have learned to adapt and navigate the world with these conditions. The journey of self-discovery and acceptance is ongoing. There are moments of humour and connection with loved ones. Yet, the struggle with overstimulation and social interactions remains. Understanding and support from my family and friends are crucial in helping myself with my autism and ADHD. Learning to manage my symptoms and leading a fulfilling life.
have you experienced anything similar, if so what are your hints, tips and tricks? how do you help yourself, have you managed to remove your mask completely? let me know your thoughts….
Just pootling along.
Kayleigh x
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