ASD Social Group, Caerleon

Photo: Karen Thompson, who has Asperger syndromeI was diagnosed with an ASD (Asperger syndrome) in May 2005. Three weeks after my diagnosis the ASD Social Group started up in Caerleon. It helped enable my transition from undiagnosed to diagnosed, as I learnt about other people's experiences, most of which helped me greatly. It was the only service I received then as an adult, and is the only service I receive now. Along the way, a support worker position – which may have provided me with someone whom I could ask for help – was lost due to funding cuts from Aneurin Bevan Health board.

Although I am grateful for the funding of the Adult and Young Person Social Groups by Newport Steering Group, changes to the way it's allocated have meant losing the things I found most enjoyment in, such as group discussions. We rarely have these anymore. It is more educational, with less specific interaction within the group. However, some individuals who have made friends within the group do socialise at other times. But this has not happened for me.

I support the NAS campaign for an Autism Act for Wales, as although I don’t mind being on my own, there are times in the week when I feel lonely and unsupported by the wider community.

I live at home with my mum, and she is the one who carries most of the responsibility for the things I need help to navigate. As I am writing this my mum is dealing with an issue regarding my health, which is the result of confusion over my designation regarding ESA and whether I pay or don’t pay for dental treatment. There are always issues that come up which I am unable to navigate, and this is frustrating as well as upsetting. This may not be happening all the time, but I am on ESA because the Jobcentre could not find me a job. They recommended Incapacity Benefit before it changed to ESA.

The challenges of living out there in the world are hard for a lot of people who do not have autism. Personally, I sometimes find things difficult before I even leave the house. Although I have some social interactions in my life, I spend most of my days making cards and other things, but still feel lonely. My Mum does her very best for me, and I appreciate this, but we are both getting. I hope she will be around for some time yet. But I often wonder what I will do when she is no longer here. Will I be able to get the support and help I need, along with all the other people with autism?

There needs to be more support for autism, not less. The money available needs to be used more effectively, along with voices that can speak up for all. Every voice needs to be heard, and valued.