Back in November, a few months after starting my blog, I decided to check out a blogging event in London run by Mumsnet. I wasn’t sure what to expect, but they had a good list of speakers, so thought I might pick up some tips. I signed in, and was given a name badge with my twitter handle on @stories_autism. As I queued to put in my coat the woman in front turned around, took one look at my badge and said “Hi, I’m Ella, I was recently diagnosed as being autistic!”
We struck up a firm friendship throughout the day, and here Ella provides us with a very honest account of how last year changed her life, when she found out she was autistic!
Life has always been difficult for me.
As a child I never felt like I fit in. I struggled to feel accepted in a world that seemed designed for other people, not for me. Life was too noisy, too smelly, confusing, too much, and people seemed unable to understand and accept me.
As an adult I continued to struggle.
I couldn’t stay calm when things didn’t happen the way I expected them to.
The social world felt like a minefield. I yearned for people to understand me but, unaware of social rules and emotionally liable, I kept getting it wrong and alienating myself.
My sensory difficulties impacted on day to day life and I wanted to find answers and treatment.
I spent a decade engaged with mental health services.
I was eventually diagnosed as bipolar and tried medication and therapy. Reading about bipolar disorder, it didn’t really explain my experiences, but I accepted the doctors diagnosis and advice, willing to try anything that might make me feel better,
Finally, the best thing in the world. I started a family. First a son, followed by another son, and finally a daughter. I struggled with being a mum, but equally I loved it and finally felt like I belonged, as a Mother and within my family.
My eldest son wasn’t typical. He lined things up in rows, span the wheels of his cars for hours on end and though his language was advanced for his age, he spoke like a pedantic middle aged man. I suspected some form of autism and when his school also had concerns this was confirmed by a paediatric team when he was eight.
Then one day, shortly after his diagnosis, I took him out for lunch in a local cafe. When my usual parking spot wasn’t available, and I was unable to find an alternative, I had a meltdown.
Mid-meltdown I looked at him sitting in the back of the car, and in amongst the guilt of being ‘that mum’ I realised something. He and I reacted to our difficulties very differently, but I saw in that moment that it was possible that my issues were because of autism too.
I did some research. I was particularly interested in articles about the different presentation of autism in women. Everything I read confirmed my suspicions so I went to see my GP and presented him with my findings. He agreed to refer me to my local adult autism team and eventually I got an appointment.
I saw a learning difficulties psychiatrist, Dr Peter Carpenter. An expert in the field of diagnosing adults. After a three hour interview and tests, he confirmed that I was right. I am autistic. I received a diagnosis letter and took part in a six week post diagnosis course with around eight other recently diagnosed adults.
It’s been ten months since I was diagnosed and in many ways my diagnosis has been extremely enlightening and helpful. Finally I understand why I feel different, who I don’t seem able to cope with everyday things. The diagnosis fits, oh how it fits, and now I have a community to identify with.
I have been developing coping strategies. Working hard to understand the social world, and to be more successful in dealing with people.
I am learning that I need a lot more alone time than I realised, time to reduce stimulation and help my brain to process the parts of life that I need to engage with me. I use headphones to reduce noise when it becomes too much, fiddle toys to help me concentrate on conversations and a weighted lap pad to help me calm down when my anxiety overwhelms me.
My feelings about being autistic vary from day to day. On a bad day I find it hard to accept that I will always be autistic, that I will likely always struggle with life more than most. My self-esteem can plummet quickly, and on those days I find it hard to like myself.
On a good day I feel proud.
That despite being autistic I’ve achieved a lot.
I have a family, a home, and friends who care about me.
On good days I see that being autistic isn’t wrong, or something to be ashamed of, it’s a neurological difference.
Autism means I see things differently and that can be useful. It means I’m brilliant at organising things, categorising things, and list making. I think the world is full of different types of neurology and there is a place and use for these differences.
On a good day I can say proudly “I’m Ella, I’m autistic and I deserve to be accepted for who I am.”
Ella lives in Bristol with her husband and three fantastic children. She is a self-confessed nerd, enjoying board games, lego building, and curling up with a good book. You’ll also find her snuggling up on her precious, purple leather corner sofa, half watching TV, half catching up on Twitter.