Inclusion

Autism – We kinda get it

Helen Cullis

Our Indigo Minds Network

May 20, 2021

As part of our celebration, we’re shining a light on some of the neurodiverse variations, starting with autism. So, what is autism?​

Autism is a neurological difference: one with a unique way of thinking and experiencing the world. The terms ‘autistic’ and ‘autism spectrum’ often refer inclusively to people who have an official diagnosis on the autism spectrum or who self-identify with the autistic community. Autistic strengths can include attention to detail, efficiency, logical thinkers and exceptional capability to retain high volumes of knowledge of exciting topics.

 

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This week, members of Our Indigo Minds network have bravely volunteered to share their stories and experiences of neurodiversity, to highlight and support the colourful spectrum of incredible talent and skills neurodiverse people bring to Virgin Media and beyond.

Helen’s story

Hello… I’m Helen and I’m a single parent and sole carer to two autistic boys, one diagnosed and one going through the diagnosis process. If I could pick two words to sum up family life, it would be ‘isolating’ and ‘enriched’. Isolation comes from a lack of understanding and acceptance from friends, family, specialists and school staff. Enrichment comes from the diverse way in which I experience life with them, I see neurodiversity as a blessing, but I see how society deals with neurodiversity as a curse.

This journey really began when my eldest started primary school and when I raised concerns with experts (school teachers, GP), I was told ‘he is most definitely not autistic’ because academically he was exceptional. When he was four, a teacher advised of his ability in mental arithmetic and reading beyond his years. When I raised concerns that he ate lunch with the teachers, rather than his classmates, they were dismissed. Whilst he was smashing school targets, his mental health and wellbeing were suffering, he longed for that vital connection to his peers. At 10 years old he hit rock bottom; self-harm, suicidal tendency/plans resulting in a full breakdown – he could no longer mask. It took a visit to A&E and an overnight stay until we were finally heard. By chance (and it is always chance), the CAMHS psychologist recognised that he was autistic and eight months later, he was finally diagnosed.

Every part of the journey with a neurodiverse child is a battle, not because of the child but because of the lack of services, understanding and funding. Doors slammed in the face constantly, it took my child to mentally break before we were heard. After further battles with the local authority, I secured an education plan and funding for a private school place which could meet his needs. It is still a challenge, he missed 18 months of high school, but finally he’s in the right place with the right support network. He still struggles with his mental health and I am on constant watch for changes which indicate self-harm or suicidal thoughts. I know I will never stop worrying about him, even when he’s an adult.

The saying ‘once you’ve met one autistic person, you’ve met one autistic person’ is so true. My two boys are examples of this as they present differently. What you think you know about autism, unless you have lived it or talked to someone from the autism community, I would probably throw in the bin. The saying ‘we are all a bit autistic’, throw that in the bin at the same time! To be diagnosed with autism there is stringent criteria across the autism spectrum so saying ‘we are all a bit autistic’ does not make you an ally, it minimises the challenges autistic people face. Alliance is achieved through understanding, acceptance and action.

As I reach the end of the diagnosis process for my youngest son, my next battle is my own diagnosis. This is not something I had felt comfortable sharing at work, until I joined Our Indigo Minds network. Having to mask my whole life has, at times, impacted my own mental health and I’m looking forward to bringing my whole self to work and removing that mask fully one day.

Final thought, parents of neurodiverse children are highly organised, intuitive and strategic thinkers, therefore we are an asset! There is not one work role which has been more challenging than my current role as parent to my autistic boys. The one thing we do not have a lot of is patience, we tend to use all that up fighting for our children. So, my one ask would be, please don’t judge if a colleague is stressed, misses a meeting or is distracted. A kind word goes a long way and if you have some patience going spare, please send it our way.

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