I'm a mum of three wonderful children living in Pembrokeshire. My world fell apart the day I suspected my son had autism. Slowly but surely, I picked myself up and went about trying to find the right support for him. My son was one of the lucky ones as, at the age of three, he was accepted by complex needs unit which met his education needs. He was finally diagnosed with autism at the age of five because I pushed and fought for him to be assessed. Sadly many children in Pembrokeshire have waited up to seven years for a diagnosis.
I became an active member of the NAS Pembrokeshire branch where we took our campaign 'ON A BUS' to the Welsh Assembly to reduce the waiting list for diagnosis. We were joined by various members and their children, and we were fully supported by NAS Cymru. We won! We managed to get the number of children being assessed dramatically increased, but for one year only. Sadly this service is not sustainable and my biggest fear is that the waiting list will keep going back up.
Almost two years ago I became a committee member for the NAS Pembrokeshire branch. The committee work tirelessly as volunteers to ensure our members are supported. We set up and run our own youth club which is going from strength to strength. We hold regular events across the county including support groups, an extensive lending library, parental workshops, children's parties, trips away and autism-friendly cinema screenings – all to ensure our families feel safe and supported in the community.
Sadly, this is not enough. We constantly need to fundraise as we are, of course, a charity. Our members often share their devastating stories about how their children's anxieties make them prisoners in their own homes. Many have even had to put their own lives and jobs on hold to home educate their children. Many of our children self-harm and have extremely low self-esteem. There is nowhere we can signpost these children and families to in Pembrokeshire.
We need talking therapies, youth workers, respite, and professional autism teams that can support families in crisis. This all needs to continue into adulthood. Again, sadly there is no specific support for adults on the spectrum in Pembrokeshire either. We need to forward plan as there's been a dramatic increase in the number of children diagnosed with autism. And, of course, one day they will grow up to be adults with autism.
We recently learnt that the Welsh Government announced they will be removing the ringfenced money that each local authority receives to help the autism community via education and other means. There are too many failings within Wales already; I'm worried this will cause a catastrophic regression in the already failing services.
Things need to change.