Asperger’s syndrome and me

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My time at school as a pupil with Asperger’s syndrome

Adults with autism, and in particular those with Asperger’s syndrome, are amongst the most socially excluded groups of people in the UK. Many simply don’t receive the kind of support they need to achieve their full potential and have little say, choice or control over their own lives. Over 40% live at home with their parents and are reliant on them for practical support and access to a social life, and thousands say they feel isolated and ignored.

School can be a scary place for young people with Asperger’s syndrome, however some of Dinesh’s experiences show the difference that a safe and supportive environment can make. He said:

I was lucky to have one fantastic support teacher at secondary school as part of my statement of support. She went on courses and also worked with the other teachers supporting my learning in class. She even devised a staff handbook about the specific needs of people with Asperger’s syndrome. I had three really good teachers, I could talk to them. Sadly, my support teacher left and then, in my last years of school, I had someone who had no real understanding or knowledge about autism, and very low expectations of what I could achieve. She did not know how to support me or break down the class work so that I could understand it better. I felt very trapped and as a result some of my GCSE grades were not higher.

There’s a popular saying in the autism community, which goes “nothing about us; without us”, and it’s something that should apply to all areas of life for people with Asperger’s syndrome, including education. Due to their social and communication difficulties, young people with Asperger’s syndrome may struggle to develop relationships with other children and teaching staff. It’s therefore vital that they are supported to express their needs, wants and wishes. Dinesh said:

I think people with Asperger’s syndrome should always say what they need, but sometimes they can feel unsure themselves what that is. I find it hard at times to understand my own needs. I used to find it hard to know how to ask for help in the past but I have learnt how to do this independently. I think people with ASD should have an advocate and that people should listen respectfully to them. People with Asperger’s syndrome are the ones who are living with the disability and they should be treated fairly.
Many young people with Asperger’s syndrome miss out on the vital life skills they need to participate in and contribute to society. Dinesh experienced difficulties at his mainstream school, as they sometimes did not place enough importance on the support he needed to access the whole of school life.

My mum had to watch the school carefully because they did not always provide what was in my statement. My mum had to go to tribunal more than once because they were trying to stop my speech and language therapy. Although, social skills training was in my statement, this was neglected too. In my final year, the school organised a trip to Switzerland. They had concerns about taking me, but my mum worked with the school to plan ahead for the trip and I did go and had a great time. Schools can sometimes spend too much time on negative thinking rather than positive action.

Dinesh (second from right) with co-delegates to the Government's consultation for the adult autism strategyDinesh has frequently found that the extent to which he is able to engage with or participate in certain activities has been severely hampered by a lack of understanding and support, particularly with regard to planning for his future.

Transition planning seemed to me a futile paperwork exercise, they asked a lot of questions and I gave them replies, but what I received in practice was very different to what I said. People with autism need information that is going to help them make sense of the way ahead and for this to be explained clearly. I didn’t have this and it created a lot of additional anxiety and distress. Although professionals have asked the questions, they have not always provided the necessary support or steps to get me to where I want to be. I am often given a stack of information without any explanations or going through it, and my family is left to pick up the pieces. Why call them disability employment advisers if they don’t have specific skills and training or any understanding of the needs of their users?

Dinesh is currently undertaking temporary training at a café, through the mental health team he was referred to at the point of transition to adult services. Although he does not have mental health issues, there are no other services for people with Asperger’s syndrome in his area. Whilst working at the café is not what he wants to do in the future, he is getting some good work experience in a supportive environment, which makes all the difference. Dinesh said “My colleagues are very friendly, they understand me and if I don’t understand they explain instructions to me in an easier way.”

When Dinesh went to meet with the Care Services Minister, Phil Hope, in April, he had plenty of time to prepare what he wanted to say and took notes along to prompt him if necessary. The result was fantastic to see and Dinesh did a great job of telling the Minister about his experiences and how the Government could change his life. Dinesh said:

People with Asperger’s syndrome are the recipients of services and their input is major. Services should be based on what people with Asperger’s syndrome say they need. Professionals make the decisions without proper consultation. By that I mean, a consultation that is accessible for all people with Asperger’s syndrome in a variety of ways whether it is written, visual, multi sensory, etc.

I’d really like to encourage teachers or support workers to help the young people they support to take part in the consultation for the strategy; it covers the issues of transition, employment, and social exclusion and will make a big difference to their lives when they are older. In particular, it also looks at what can be done for people with Asperger’s syndrome, like me, who often do not fit the criteria for support.

All people with Asperger’s syndrome should be empowered to take control of their lives, participate as much they can in society and live the kind of lifestyle that they want to. The right support at the right time can make a huge difference.

Amanda Batten NAS

Further information
The consultation for the adult autism strategy closes on 15 September 2009. To find out about the different ways to take part, visit the National Autistic Society (NAS) website at www.autism.org.uk/dhstrategy

To see a video of Dinesh meeting Phil Hope visit the NAS YouTube channel at http://www.youtube.com/nationalautisticsoc

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