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Growing up with autism

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.

David Gill - learning disability and autism adviser

David Gill is one of three learning disability and autism advisers and two learning disability and autism network managers working on the learning disability programme. He has been with NHS England for two years.

David previously volunteered at Speakup Self Advocacy where he is still a trustee and worked as a peer support worker for Rotherham learning disability services.

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6 comments

  1. Deborah Graham says:

    Please could you advise my son is 19 he is socially awkward, socially isolated, depressed taking anti-depressants, and not sleeping, he is becoming more isolated. The GP states that she is sure that he has Asperger’s we needs a definite diagnosis to help him but do not know how to seek the help he is seeing a mental health counsellor please help we are really concerned for his wellbeing.

    • NHS England says:

      Hi Deborah, we’re not able to contact third parties directly or give medical advice via this page as we’re not qualified to do so. You could encourage your son to make another appointment to see his GP in the first instance or, if he needs to speak to someone straight away, he should call 111.

      If you’re looking for more information about Asperger Syndrome and advice on support you may find the link below helpful.

      http://www.autism.org.uk/about/what-is/asperger

      Kind regards
      NHS England

  2. Mark Boocock says:

    A wonderful read, David, and I feel like I have had insight into a large part of who you are. Well done.

    Mark

    • David Gill says:

      Thank you for your kind words Mark. I hope that my message will prove that having Autism doesn’t mean we can’t have a good life.

      Kind Regards

      David

  3. Derek Groves says:

    Thanks for the inspiring message David. I’m both a parent of a young man with Asperger’s and a manager for an Autism Charity supporting individuals to achieve the kind of independence and quality of life you have described.
    Would you give permission to share your message with other young people to inspire them?

    Regards

    Derek

    • NHS England says:

      Hi Derek,

      I would be honoured to share my story with others, I feel it is important to show young people who are growing up with Autism that it is possible to grow up to live a good life and achieve your goals.

      Kind regards
      David