Claire, 20, was diagnosed with autism in September 2010, after years of hospital admissions, and diagnosis of 'autistic traits'. Unfortunately she overheard staff at a hospital say the she had life-limiting dementia, and wouldn-t live into her adulthood. We also had a visit from a lady working in a hospice.
She attended the Asperger's class of the local high school, and managed well there, but it was only when she went to a special school that she excelled and had the best support and care. In February 2011 she began at an autistic college, but in March 2012, after she turned 18 - an age she didn’t expect to see - her behaviours increased and she was taken from the college and put into another hospital unit.
During this time, she came home almost daily, accessing the community regularly with us, taking part in the race for life, meeting with friends, and enjoying herself. In the unit though, she was struggling and she was sent to a medium secure unit on August 1st 2014. It was the hardest period of her life - being in a mental health unit with 'ill' patients, and she learned dreadful things there. It was doubly sad as none of the staff had any idea of autism, and didn’t know how to speak with Claire, or what to do with her.
It broke our hearts to have her phoning us from five hours away, crying down the phone, and us, her parents, not being able to do anything to help her. Every Sunday, we would leave here at 5am to get down to Brighton for 10am for visits ranging from two to six hours, and then have the five-hour journey home. Luckily, two days before a tribunal was due to be held for Claire, the consultant in charge removed her from her section, and she has been home here since.
That was fourteen weeks ago and finally, after years and years of hell, we have a support team beginning to work with us who want
to help Claire, and are willing to listen to us, the parents. There is a lot of talk around mental health and autism, but Claire needs more autism support: she did not
get this in her previous hospital or unit.
A lack of autism awareness is obvious – this Act needs to be supported in order to ensure that professionals and service providers finally work with parents - we are the experts but to be dismissed after 18 years of helping our child is so disappointing. If we had been listened to, maybe our poor daughter wouldn’t have been sent so far away.
We set up a petition for her, and were lucky to have 95,000 people supporting Claire, and us. People who have known her for years couldn’t believe how this could happen in this day and age.
Claire can understand and speak a little Welsh, and loves her community and town, and especially SCFC. To be removed from her family who have always supported her, and sent away to a hospital miles away in England not knowing when she would come home again, or even see her home again, is cruel beyond words. There was no thought for her, nor us. Hell is the only word that Claire, and we as a family, have been through. We are trying to move on, but we will never forgive and never forget. We are so pleased that NAS Cymru are fighting for this well needed Act and we will support them fully.
People with autism, and their families, have
to be listened to. Why should we have to fight, just to get our young people the lives and support they deserve? They have thoughts, dreams and wishes the same as the rest of us, and should have the right to happiness and care in their home country.