We hear a lot about youngsters with an ASD at university now. More and more people with an ASD are both succeeding in and completing their degrees. This is in large part thanks to innovatory schemes, ranging from individual support on class etiquette to buddy schemes addressing the isolation that some students with an ASD feel.
I talk to a lot of universities, and staff tell me that students with an ASD are now much more willing to identify themselves and access support, which in some cases means having access to someone with whom to share their anxieties. We celebrate their success and the staff supporting them in achieving their goals.
Additionally, having attended university, students’ chances of getting a job are much greater.
However, what about the youngsters whose ASD prevents them taking this route, those without speech, or whose ASD controls the things they can do?
For many, it means continuing to live at home. No longer at school, their experience of the world can diminish simply through lack of contact with the outside world. I listen to many parents who express surprise that programmes for young adults simply disappear, often through lack of funding. Any parent knows that they are a parent for life, but this can mean something rather different for the parent of a young person with an ASD. Most typically developing sons and daughters are looking for a life away from the family, a natural outcome of growing up. The National Autistic Society in the UK has concluded that very few people with an ASD have a job or any choice over who cares for them, and that 92% of parents worry about the futures of their adult children.
Many parents become warriors, and this warrior trait is needed during their son or daughter’s transition into an adult life. There are some great outcomes, but these are often won by determination, will power and a considerable amount of self-sacrifice.
David’s parents were determined that he would have a full life despite apparent limitations. The local funding authority soon learned that they would not go away quietly or accept ‘funding issues’ as a reason for the lack of services. He now accesses a programme which mirrors his interests, facilitated by daily workers. David is non-verbal but has great problem solving skills. He now enjoys a full life away from the family who are able to continue their own interests and jobs. His carers have identified what interests him – trains and stations – and his programme revolves around aspects of this interest. His carers expand his horizons by enabling his interest to develop from just seeing trains to visiting different stations and collecting literature. Alongside his cycling, which has improved his fitness and motor skills, and a weekly pottery class, he has – if not a fully independent life – one where he is able to be away from home, independent from his parents, returning to his family home at the end of his day.
Hal is in his middle years. He lived at home with his mother for many years until her death. She became dependent on him for family tasks, but she determined the shape of his day and his horizons. After her death, his new carers – unable to provide the 24-hour care his mother had provided – set about an increasing programme of independence. Simplifying his living conditions, transitioning from the family home to a flat where he chose colours – Hal is very fond of red! – and furniture (not their choice but his) meant that more choices in his life were ‘Hal led’. In his late 50s, he now travels independently and has recently learned to use a washing machine; this took around four months. However, it has taken eight years of carer support to achieve what was unthinkable eight years ago.
Both these examples have been achieved not by proactive work by local services but by family and friends. Those achieving higher education, although facing many challenges, are increasingly entering a world where their problems are acknowledged, and accommodations provided. Those not following this path are still dependent on their advocates, usually their parents.
The question remains, what happens to those young people, whose parents perhaps do not have the energy to be ‘warrior parents’, or those alone? Surely they can be as valuable to us as human beings as anyone else. Perhaps it’s time to look at those unable to make a financial contribution to society and measure them in different terms.
Ai-Media Executive Director UK