Andrew had a SEN statement of ‘social communication difficulties’ in school from the age of 7 and a diagnosis of Asperger Syndrome, a high-functioning Autistic Spectrum Disorder, from the age of 13. With appropriate support (hard-won by us, his parents, from the Education Authority), Andrew thrived in Primary School, where he achieved above-average results and had a good group of friends.
He found High School very difficult with its many changes of staff and rooms. Some teachers were more understanding than others. Andrew stopped going when he was 14, to study online at home.
Andrew gets on well with his youngest sister (5 years younger) but has had a turbulent relationship with his sister 2 years younger, because they are so different from each other.
In January 2011, Andrew had returned home in a distressed state, aged 18, following the breakdown of an ASD residential college placement the previous month.
At this time, Andrew had no support, apart from immediate family. He had few activities to take part in – his school friends had all left to go to University and there was no professional support forthcoming.
To say the situation was hugely challenging, both for Andrew and for us as his parents, would be a gross understatement. We knew he needed extra professional support to develop into a functioning and reasonably happy adult, but were completely at sea as to what that support could involve or how to access it.
As Andrew’s parents, we wrote a dramatic letter to Social Care, saying we did not want him to have no future and pointing out the possible consequences of Andrew having no appropriate support apart from family.
With the help of a good social worker, we began to explore possible options for support with Andrew, using the new Autism Framework.
The social worker put us in touch with Imagineer, who run The Outsiders, a music group unique in providing an environment where people with difficulties rehearse and perform with professional musicians.
It was through this contact that we became aware of how support could be provided through Direct Payments, with a Care Plan agreed by a Social Care panel.
This knowledge and support gave us some hope for Andrew’s future. Andrew began attending The Outsiders with his bass guitar, which helped him to enjoy himself, learn new skills and build on his previous knowledge.
Once Andrew began accessing some appropriate activities in May 2011, he said playing guitar with The Outsiders made him feel ‘really good’.
Funding was still not available for other support – he began The Outsiders on a free 3 month trial- and didn’t get approved by Social Care panel until November 2011. This was over a year after we began trying to put pressure on Social Care to help us and Andrew.
That is one reason I am writing this account. I had written that it was an untold scandal, but Andrew (on proof-reading the text) said that was too much like tabloid journalism! Not that there is a ‘one size fits all’ solution, especially in ASD. Pause to salute the various individuals and organisations working hard and creatively to help young people with ASD and other difficulties progress to a satisfying and secure future.
Andrew moved to supported shared accommodation near our family home in August 2011, where he develops his independence skills by buying and cooking his own food, walks into the city center with staff / other residents every week and relates to a diverse range of care workers of different ages, educational and life experience and cultural backgrounds, who each bring their various talents to the role of supporting Andrew and the other residents.
Andrew now accesses appropriate autism-specific support for activities on 3 days a week. These activities include buying ingredients and cooking meals from scratch, playing bass guitar and outings to cafes, pubs, and shops.
As well as playing bass guitar with The Outsiders most weeks and performing in 4 concerts to date, Andrew has developed an interest in gardening and recently grew 3 chili plants from seed independently on his window sill.
Andrew’s days are now filled with activities he enjoys and has chosen. It’s not the end of the story, more like a new beginning….