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This statement on behalf of Anne, was read out by Mia Rosenblatt (National Autistic Society) at Disability Alliance's incapacity benefit reform conference.
Autism, including Asperger Syndrome, is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism generally experience three main areas of difficulty- these are with Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people), Social communication (difficulty with verbal and non-verbal communication, for example not fully understanding the meaning of common gestures, facial expressions or tone of voice) and Imagination (difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities).
What I am about to say was written by Anne, a woman who has autism, and is her account of her experience in employment and with the benefit system…………….
In the last 10 years or so Asperger Syndrome has become more and more
understood as having the same features of autism but affecting people who may be in some ways highly capable but cannot make it in the conventional sense in the workplace.
Some people on the autistic spectrum may be of high intelligence with good language abilities. However, they will still have the symptoms of not being able to tune into social situations or interpersonal relationships. Even if a person has a high academic ability the features of autism will still be clearly obvious and often a good exam ability does not translate into career ability.
Many people with Asperger syndrome are working at below their academic level because of the need for routine and a distance from the cut and thrust of juggling changing situations though some find a niche in a specialist academic world of their particular interest where the academic year is laid out and everything is geared to their particular expertise. For the employers it can be difficult to deal with an employee who has obvious ability in certain areas but does not engage in teamwork or take responsibility for quick decisions that have to be anticipated and acted on.
I left university in 1986 with a law degree but was not able to continue the process to go into legal practice work as it was my memory ability and love of exams that earned my degree, not the ability to discuss in tutorials or cope in a company.
At this time my Asperger syndrome was undiagnosed. Although I had marked behaviour patterns which were commented on in the 1980's Asperger syndrome was not understood as it is today. I had long term self harm behaviour and depression which also prevented me from being in situations such as responsible work.
I took a secretarial course which I loved with the routine of typing and filing and started a few temp jobs. My first proper job was in a publishing company as editorial secretary and problems arose very soon. I was meant to have a handle on the book production process in all aspects but I could not grasp why it all mattered and I was just interested in the routine tasks which followed a pattern. It was causing a lot of stress within the department and as I was undiagnosed then I had no idea what the problem was.
People with autism find it almost impossible to pick up the wider sense of what is going on and the requirements needed of them and I could not join in the general teamwork needed to prepare books for publication. I preferred to communicate with my boss through notes instead of speaking and I was given a lot of leeway and patience but eventually was asked to leave. I wish I had been diagnosed then as it would have been different if the firm had been given information about what to expect and how to structure the job in order to take into account my need for systems and order.
I did some more temping jobs which I loved as I was required for specific tasks, for example, to clear filing backlog, typing backlog - which did not require me to be a member of a team and which I was good at with quick typing and genuinely loving filing. However, I had long term self harm behaviour and mental health issues which were catching up with me and I became unable to work in about 1991 and was signed onto disability allowance.
In about 1993 I read an article by an Australian lady who had been diagnosed with Asperger syndrome and it clicked inside to outside once I had seen it on paper. I told the psychologist and my GP and the diagnosis process started. I was on benefit which needed signing to renew and after being diagnosed I was linked up with Prospects, the employment service of the National Autistic Society, to look for work with a support worker.
I had a short term job but had a spell in hospital soon after starting. I carried on part time for another 6 months or so but became increasingly unwell and had a couple more periods in hospital, one lengthy in 1997 after taking an overdose.
When I came out of there, I was still focused on how to be working but instead I came into the more secure benefits which didn't need to be signed for. It made a huge difference to me as I was not always thinking about work and consequently making decisions that were totally inappropriate to my mental state and I was able to receive treatment.
Having the knowledge that the incapacity benefit was going to be ongoing for a while and work was not on the cards, I have been on a treatment programme for a year and have done some courses at local college, and other things that have concentrated me on my well-being rather than the fact of being in work. If I was on short term benefit I would be always having one eye on being off it and not taking account of what was going on underneath internally. My anxiety of having to renew, say the reasons etc were taking my concentration rather than saying if I really was able to work.
I have been helped very much by having the security of not having to get renewed regularly. Being autistic I do not show how I really am and I was worried I would be called in for an assessment and I would say I am very well thank you and they would say you start work next week and then I would be in hospital again. I have been lucky with an incredibly helpful GP surgery. An assessment did come up and my GP wrote a letter and I am not going to be assessed for another few years. Because I am so keen to be off benefit, every day I think of it, having the security of what I am given now means that I am more able to think step by step and avoid the situations of the past. I had no trouble getting the disability allowance in the early 1990's or after the hospitalization periods so I was lucky.
But if I had not had the mental health system contact I think it would have been harder to access secure benefits as people with autism often do not show what they are thinking and would not be able to give a full account of their health to a benefit agency worker deciding on their case. The security of such benefits is important to autistic people as they need a specially tailored job.
To be pushed into a job that is not suitable is extraordinarily stressful and usually results in losing the job. For people with autism who do not have a support worker it is very difficult to show the breadth of difficulty they face in working and someone at the benefits agency would not be able to know and might withdraw benefits thinking they should be working. Now more is known about the autistic spectrum but still the issue is current for lots of people.
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