Autism Acceptance Month: Esther’s story
For Autism Acceptance Month, the Transforming Care in Autism team reached out to one of their service users, Esther, to share her story. We asked Esther what autism means to her, what challenges she has faced and what she would like others to know about autism.
Below is Esther’s story in her own words.
“The NHS Transforming Care in Autism (TCA) Team have been instrumental in giving me the confidence to ask for reasonable adjustment.
I have also become much more knowledgeable and open about my autism.”
What does autism mean to you?
“Hi! I’m Esther (she/her) and I was diagnosed with autism back in 2009, when I was 8 years old. My original diagnosis was of Asperger Syndrome, which is no longer used as a medical term. If I was diagnosed today, I would be considered as having high-functioning autism, however personally I am less keen on this term.
Autism Spectrum Disorder is a form of neurodiversity that affects how individuals interact with others, communicate, learn and experience the world the world around them. Many people with autism have sensory differences also. In my case, I am particularly sensitive to loud, and/or high-pitched noises, as well as finding some clothes’ materials scratchy that other’s might not. I also find bright lights and lots of background noise can be uncomfortable for me.
I would say the main characteristics of my autism are my black and white thinking style, which can mean that I often take things literally and can misinterpret social cues; my resistance to change, uncertainty and difficulty with switching tasks; my tendency to hyperfocus on tasks for long periods of time; having intense special interests; being very empathetic; reduced eye contact; stimming; difficulty with emotional regulation; strong attention to detail; needing extra time to complete many tasks; proneness to sensory overload; sometimes speaking too quietly.
I think it’s important for me to mention that everyone’s experience of autism is different so it is highly likely that others with autism reading this may have different autistic characteristics to me. I believe it’s very helpful to learn about other’s experiences of autism and we can take inspiration from their coping strategies. I also think it’s important that we personalise the coping strategies because it’s not one size fit’s all and that is how you will get the most benefit.
Also, autism can present itself differently in males and females. Females with autism may have fewer social difficulties than autistic males, which may be due to them being more likely to ‘mask’ their autistic traits. The stimming behaviour and intense interests of women and girls with autism may also be less obviously signs of autism, such as twirling hair or being very interested in a music artist. A common stereotype for autistic people is that they are fascinated by trains, however this is only one example of a special interest.”
What challenges I have faced and how I’ve overcome them?
“Growing up, I found it very difficult to make friends, despite wanting to. I was fortunate that I was diagnosed with autism early on, which meant that I could work with the SENCOs at school. My primary school helped by organising a regular structured ‘friendship group’, which gave me dedicated time outside of break/lunch to build friendships.
At secondary school, when I was in Year 9 or 10, my history teacher noticed that my essays would take me a bit longer than others and I often ran out of time during my exams. He therefore suggested to my parents and I, that I take an assessment to see whether I would be eligible for extra time in exams. I went on to complete the assessment, which did in fact show that extra time would be beneficial for me. Ultimately, this meant I wasn’t disadvantaged during my GCSE and A level exams. As a current university student, I also qualify for extra time during exams and coursework deadline extensions, which have been key to my success on my course.
I like to have a plan and follow a routine, so find transition periods particularly stressful and overwhelming. Standout events so far for me are going to secondary school, starting a new job, moving house and going to university. During these times, I find it useful to have extra support around me, where possible, for example, having regular check-ins with family and friends. I find it helpful to talk through my worries and concerns with those close to me. I also find it comforting to know as many details about the change as possible. This helps settle my nerves and manage my expectations so I can regulate my emotions more easily. I have also learned that I need to be particularly kind to myself during these times as I will find them more challenging initially, but I must trust that they will get easier too.
I have found that only recently, I have developed the skill of advocating for myself. As an autistic female, I tend to mask a lot and try to keep up with my neurotypical peers. However, this can lead me to experience autistic burnout. The NHS Transforming Care in Autism (TCA) Team have been instrumental in giving me the confidence to ask for reasonable adjustment. I have also become much more knowledgeable and open about my autism.
I have read a few books written by autistic people, which I have found inspirational and would recommend. The first couple are ‘The Reason I Jump’ and ‘Fall Down Seven Times, Get up Eight’ by Naoki Higashida. Naoki Higashida has severe non-verbal autism and uses a communication method based on an alphabet grid. He shares practical insights into autism, and he wrote ‘The Reason I Jump’ when he was only thirteen. Another book I found relatable and offered some unique perspectives was
‘From Hurt to Hope: Stories of Mental Health, Mental Illness and Being Autistic’ by Mair Elliott. This essay collection shares the stories of several autistic people, many of whom have co-occurring mental health conditions.”
What would I like others to know about autism?
“I would like others to know that autism is a spectrum and therefore if you’ve met one person with autism, you’ve only met one person with autism. The best way to support someone with autism is to ask them what challenges they face and what adjustments might help. This may require some flexibility and open-mindedness.
I would also like others to listen to autistic people and take what we say seriously. We tend to be very honest, literal people.
Finally, I would like others to focus more on the positive attributes that autistic people have.”
Thank you Esther for sharing your story with us!
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