Campaigner for people on the autism spectrum
I talk to a lot of people with autism and their parents, especially in Neath Port Talbot. I think the situation in a lot of cases is dire and not acceptable.
My son was diagnosed at 11 although he was referred to PRU at 8 as the school could not cope with his behaviours. The PRU had small classes and also had high levels of support and we were lucky enough that my son stayed there longer than was usually allowed.
He had a statement and we, as a family wanted him to go to a special school as we believed he would have the best support but we had to fight and fight because he had an IQ which was over 74, which is the cut-off point. Reading this makes it sound easy but people do not understand the stress that families go through when continually having to argue for what’s best for their own child. It is awful.
Sometimes it feels like it’s down to luck. He was accepted into Coleg Sir Gar in Ammanford and he thrived because the support was there and it was a small college and from there he enrolled in the Priory. My son is a keen sportsman and through him taking part in disability sports he has learned a lot of social skills. It really has helped him develop, which shows how much support can help.
But the fight for support never stops. Last year my son regressed but it was during college holidays. The only support out there is either Mental Health or Learning disability and my son is neither. We were lost and I know many other families are as well. The Mental Health team were our last resort and because they class him as an adult, they wouldn’t speak to us as parents, only to my son. It shows a lack of autism awareness. I hope this Act can make sure that professionals and service providers work with parents and listen to their issues and concerns. There need to be dedicated autism teams because there is not enough autism expertise out there. Many GPs are also in need of training because they just don’t know enough about autism and they should do. Again, I am lucky my GPs are amazing I just wish others were the same.
I’m glad NAS Cymru are fighting for an Act and I hope people get behind the campaign. People with autism need to be listened to and so do the parents that have to fight day and night for the services their child needs.