05 Oct 2021
Undiagnosed Autism and ADHD
A Story by Tabi
I want to share what it is like to have gone most of my life with undiagnosed autism and ADHD and to get lost in the mental health system.
Receiving a late diagnosis was the start of my discovery of my true self. At first, it was a roller-coaster of emotions, relief, happiness, anger, and grief and at last since arriving at Magic life I am learning to accept myself.
I am autistic and proud of the progress I’ve made here. Autism is not a personality trait, it is me. My thinking differs, my understanding of the world differs as does my understanding of the world, how we communicate, and how I understand people’s intentions.
Communication has always been hard for me, I mimicked my peers in order to know how to blend in, but I was always an outsider in a world I didn’t understand. It was and is impossible for me to access emotions so despite a very traumatic life I was never able to use therapy because I had no emotional content to work with my experiences. I mask at such a high level that I pass off as being highly intelligent and compliant without any real understanding of danger and the world around me. This has always made me highly vulnerable and at the repeated risk of exploitation.
My presentation led me to be diagnosed as treatment-resistant, complex, difficult to engage, and chronic. I was pretty much written off by mental health services, told I had too much insight and over skilled whilst my inner world lacked understanding and led me to live a life where I was a constant risk to myself and despite my best efforts to remain in the community was frequently hospitalised leading to further trauma and misdiagnosis which fed into my feelings of hopelessness.
This month marks nine months hospital free. I still struggle daily with my mental health and managing my level of risk, but I am living the best quality of life with high levels of support. Without that support, I doubt I would be here. I still struggle
To engage in activities and life skills, but with support, I am trying to train my brain to challenge a lifetime of negative beliefs that I had been brought up with as a neurological, white female from a good working-class family.
It is hard battling your own brain, trying to engage myself in daily tasks like just getting up and showering, that most people take for granted. These things are not instantly rewarding and are sensory hell but I’m working on trying and etching this into my muscle memory.
Being someone who is autistic with ADHD is hard. Part of my brain needs sameness and routine and is very inflexible, the other struggles to complete small tasks and my world feels like chaos. I don’t function well without lots of visual and verbal prompts and I still don’t really understand the danger.
Communication remains hard but at Magic Life, I feel surrounded by people that have taken the time to learn how to communicate with me, they are transparent and literal to my difficulties with tones of voice, facial expressions and generally not understanding social cues which caused me a lifetime of difficulties in relationships at school, amongst professionals, with peers and in relationships.
I still find it hard to observe personal boundaries, I am always at risk of autistic burnout or shut down from trying to people please, masking and absorbing other people’s feelings which results in shut-down or meltdowns.
These are not me behaving badly, they are a direct result of my being unable to express or recognise feelings. Sometimes it seems easier to mask because it makes me more acceptable but masking is not a privilege, it is traumatising and exhausting. It adds to a lack of identity and low self-esteem as I live in fear that my true self won’t be accepted. The real me is often socially awkward, clumsy and lacks a filter, but I pride myself on my honesty.
Many days I get down and think how different my life could have been if correctly diagnosed. I definitely would not have gone through so much trauma, but that is something I will need to work through for the rest of my life. But this is where I am now. I am living a life that a year ago I thought was never possible. My life is nothing amazing, it is basic but I am alive. I have a family that loves me and have had to come to terms with knowing I am autistic and I am surrounded by people who care about me and support me with everyday living and remaining as safe as I can.
I am autistic and I am proud of how far I have come because I am learning to live life differently in a way that accommodates my needs.