Joyce CoomberSewell: ‘This is Me’ – experiences of Autism

Hi, my name is Joyce CoomberSewell, I am 69 years old, and I have always known that I am different to other people around me.

By the age of four I had decided that I was probably an alien dropped from another planet.

At school, though I hung out with a group of girls, I always felt like I was on the outside. This feeling of not quite fitting in continues throughout all my life, no matter what social circles I am part of; work, social clubs, relationships, and friendships.

Six of my grandchildren have been diagnosed with autism, which prompted me to seek out my own diagnosis.

I started this journey at the age of 58, though it took me two attempts and a total of five years.

My first attempt resulted in me being diagnosed with ADHD and Dyspraxia, but I was told that as I had not managed to have the third questionnaire filled in by someone who knew me as a child I could not be given a diagnosis of autism even though they were 98% certain that I was autistic.

On my second attempt when I was 63 I was diagnosed but had the initials NOS added on at the end. NOS stands for Not Otherwise Specified. Again, as I knew no living person who knew me as a small child and I cannot raise anyone from the dead, I could not get one of their questionnaires filled in. This is a common problem for older people.

Once I had been medically diagnosed as autistic I found it much more freeing knowing what was the reason for my ‘differences’. I now don’t view myself as odd, unlikable or any other negative thought. In fact I am now very, very out, and proud. I would never want to be anything other than autistic as that is who I am.

I am currently studying for my PhD. ‘This Is Me’ and other older women’s experiences of Autism. I am looking to interview 8 to 12 woman (gender defined at birth) over the age of 50 who are medically or self-diagnosed as Autistic. After all knowledge is the key, without knowledge misconceptions can perpetuate.


If you would like to be part of my PhD, fully anonymised, please contact me on [email protected] or phone 07789 685185. Find out more at

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