The first days of school for my son and I were hard, gradually the excitement and hopeful anticipation of all things school ebbed away and it turned into a place of rejection and isolation for us both. Two years in mainstream were two years too many, they did damage but the specialist schools that followed, although sometimes somewhat imperfect and experimental, at least gave him friendship and acceptance and also gave me support and friendship too.
University was a punt. Son had done so well in mainstream college the year before, even sleeping over with a new friend in Brighton once a week. Seeing him perform at The Old Market at the end of the year was quite possibly one of my most perfect days. I was worried about Uni but the door was open and son wanted to go. You all know the story of the first year, the trauma of his illness in the first few months certainly didn't help but he passed. I was really worried about the second. Then after the first term the pressure was starting to show. Social isolation and rejection were really kicking in, both in real life and on social media. We met with the Uni who again were great and we tried to limp on for another few weeks until son could take it no more. He has deferred his course for now.
My son’s mental health has been at the heart of everything I've tried to do for him. Building resilience in a mainstream world is something I've tried to help him with in the last couple of years as he'll always have to be part of it in his adult life. But there is only so much resilience that anyone is capable of without expert help and support. I sat next to him at the GP whilst he explained how he was feeling and watched him complete a questionnaire which showed just how much he was suffering and in pain. That was the day I had always dreaded.
One of the things the GP asked about was what he was going to do with his days now. It had only been a week, he was still coping with the decision he has made so couldn't even begin to answer the question. I said I knew the importance of structure and that I would be around to help him with that. What this actually means though is another day I have been dreading, the end of education and the transition to work and adult autism services. Ensuring structure in his day, friendship and a sense of purpose.
I used to sit in meetings with other parents who had been battling for years and whose children were adults. I was full of fight and passion and focused only on education. I used to listen to the older parents but not properly, I just couldn't cope with looking that far ahead. My work with the NAS, however led to my involvement in the Autism Act which was the first step in ensuring services for Autistic Adults who fell through the cracks in local authority services. We all know that adult social care is chronically underfunded and the focus is mainly on the elderly but there is a tsunami of young adults heading towards the social care system who don't meet the restrictive criteria but who desperately need services. My son is one of them. I'm already seeing the huge gaping holes in systems and services and I'm part of my local Autism Partnership Board trying to change things. But as one councillor recently said "The wheels of local government move more slowly than a glacier on grass".
So I'm asking if you can help me push that glacier along a bit by filling out the NAS questionnaire below which is following up on the Autism Act and putting pressure on the powers that be to meet statutory requirements and fund services properly. There is very, very little in our local area. Structure?? Hmmm how so.
https://www.autism.org.uk/get-involved/media-centre/news/2019-01-24-autism-act-survey.aspx
