In the first of three blogs highlighting the experiences of children, young people and families with a learning disability or autism, David Gill looks at what has changed and what is being done to improve their quality of care, quality of health and quality of life:
This feels like quite a time to be writing a blog about my experiences through childhood.
As I turned 30 four days ago, I guess makes it a good time for me to reflect on how far I have come.
Had I not been supported by my parents, family and certain services the way I was, I feel that I would not have got to where I am today: living independently (with support) in my own flat, engaged to my girlfriend Charlie and in full time employment as a learning disability and autism adviser for children and young people at NHS England.
I was diagnosed with Asperger’s Syndrome back in the mid-90s when I was eight. At that time I was in mainstream education at Blackburn School but was struggling and seen at school as the ‘bad kid’, particularly after I bit a teacher.
When I moved to a school for children with autism – Priory Annexe Storm House School which is today The Robert Ogden School – things got so much more positive. The classes were smaller, which made it much easier to concentrate on my work, and I wasn’t sitting in cupboards to get away from the class. It just felt like I mattered.
I lived at home in Rotherham with my Mum, Dad, my younger sister Sarah, my older sister Laura and older brother Paul. At the time my family found it difficult as I wasn’t always easy to live with but my Mum and Dad always supported me and made sure I was included in the family.
I also had all my Grandparents who I saw every week and were very supportive as well, so I had a good family unit around me. Sarah particularly found it difficult growing up with a brother who was autistic as I used to try to take all the attention from her. But she went to groups for brothers and sisters of people who are autistic, and we are still very close today.
I am not a typical autistic person as there is no such thing and I have my own likes and dislikes. As a child I read The Beano and Dandy a lot to the point where I was obsessed with them. My Grandad used to read me Desperate Dan every week and, as a way to get me to eat certain foods, he would tell me that Desperate Dan would eat. I have always read comics and it’s still something I do today.
I am a massive Sheffield United fan and my Dad started taking me when I was five. At first I found the crowds and noise hard to cope with and I was covering my face up with my hood a lot making it hard for me to watch the match. My Dad kept taking me to matches as I liked watching football and eventually I got more comfortable with going. Today I still have my season ticket and we still go to matches. I love watching the Blades and have even been to away games with my Dad or my cousin James.
We also went on our family holiday once a year abroad. I am sensitive to certain smells and I used to cover my face up every time I smelled aeroplane food on flights. Again, like the football matches, my parents kept including me on family holidays and now I like to go on holiday abroad with Charlie every year.
As I got older, family and staff from school decided it would be best if I went to a residential college in Grimsby where I could learn life skills that I would need as an adult. At first I struggled to settle when I was there as I had never lived away from home before. When I did settle though I gained all my qualifications, made loads of friends and learnt how to be independent, eventually living in a student flat with another lad, Iain, who is now my best mate. I did still go back home for holidays and certain weekends when Sheffield United are playing.
As you can tell from this blog, this has all worked really well for me – but it might not for someone else. That is what I mean by ‘we are all individuals’.
That is how Transforming Care should work for children with learning disabilities, autism or both. It should find a person-centred way for people to live as good a life as possible and that will be different for everyone.
My journey through life is what has worked for me, and on that note I guess it’s back to celebrating my 30th.