Programme Review Newsletter
of the DAAS meeting held on
Tuesday 21st Frebruary 2017, 7.00pm
Bournemouth University, Wallisdown
|Welcome||Steve Mason hosted the meeting, welcomed newcomers and congratulated Carole, Brian and Richard on the new addition to their family, baby Reuben.|
|N O T I C E S|
|Membership||DAAS membership year starts on 1st April and renewals can be accepted from this evening and through March. Forms are available on our website.|
|Help needed||Now that DAAS meetings are growing Steve announced that extra help is needed for a wide variety of tasks and asked that people should let one of the Voluntary Directors know if they are prepared to assist in any way.|
|Consultations||Steve reminded the group that our views are being sought on a consultation about proposals affecting mental health services and the acute care pathway https://www.mh.dorsetsvision.nhs.uk/ The consultation is open until March 31st so if you haven’t yet checked out the proposals and added your views then please do so. Several people on the autistic spectrum find they may need these services so this is a good opportunity to get your voice heard. Details of the venues for consultation meetings were available on the night and had been posted on the Facebook page.|
|Independence Poll||The results of a recent DAAS poll on services needed to support people to be independent had been posted to our Facebook page and full results were available to people at the meeting. Several DAAS members had contributed and the results had been fed in to the ASC Partnership Board to inform future plans.|
|AW Event||On 14th March Autism Wessex hosted an event at Poole College entitled My Life with Autism featuring DAAS Member Arsenal Whittick and his family. The previous event on this theme was very inspiring and featured Arsenal and other DAAS members (Steve Thornton and Annie West).|
|Autism Awareness||Three of our members will be speaking about their Asperger’s/HFA in “My Life with Autism” - at an event organised by Autism Wessex on October 25th and Carole wished them well. We understood the event is now fully booked.|
|Autscape||Trish Jubb spoke about Autscape, an autistic conference created by autistic people for autistic people. This year it will take place in Northampton at Kings Park Conference Centre from 8th – 11th August 2017. Details can be found on line at http://www.autscape.org/ The conference is an autistic friendly space with several autistic speakers and interests, catering for special diets, a sensory room with coloured lights and a badge system to indicate how social you want to be, or not. Trish helps to organise Autscape and introduced James, a colleague from Stockport who is also on the Board. Trish reminded people that the conference does get booked up so if people want to go they should act promptly.|
|Sailability||Poole Sailability are offering free taster sessions for people with impaired health or a disability. Leaflets were available at the meeting and Steve encouraged people to have a go ! See www.poolesailability.org.uk|
|Social Events||Men’s evening – Steve is putting together ideas for this and will contact people who have expressed an interest.|
Social Calendar – Amy Pickford has produced an outline social calendar. There will be an activity every month and Amy will put details on the DAAS Facebook page. She asked for contact details from those interested. Amy has since made the calendar available for circulation and a copy is attached to this Review. A lot of work has gone into this in response to people’s requests for social events so please do your best to support this initiative.
Table Top Games evening. Dan Palmer told the group about this venture which is currently free and is held on every other Wednesday evening at Gallone’s Ice Cream parlour in Bournemouth from 6.30pm to 8.30pm. Dan will put more information on Facebook or if you are interested please see him at one of our meetings.
|CAAS Project||Jo Mengell, CAAS Occupational Therapist, explained about some changes planned for sensory assessments and a project to develop a new assessment. They are looking for volunteers, both people who have Asperger’s and those who don’t. to come and try out how/if the assessment tests work. People will be asked to come for an afternoon or an evening to try out some of the tests - similar to the SIPT test (Sensory Integration & Praxis) which some people have already done. People were asked to sign up if they were interested in finding out more, letting Jo know their availability, but not necessarily making a commitment at this stage. The venue is not yet confirmed but will probably be in the Poole area and the project will take place in March or April.|
|Asperger’s & Work – meeting the challenges – a personal experience||We welcomed back Paul Siebenthal who had spoken the previous week at DAAS West when he talked about his personal experiences and challenges in the world of work. Paul currently works at Dorset Mental Health Forum, based in Dorchester, and started by outlining his work history and how his career had progressed, with many trials and tribulations en route. Along the way he had identified some techniques and strategies which had helped him to function. Statistics show that only about 16% of people with Asperger’s are in full time work and there are many challenges to face. Paul is now 43 and was diagnosed as being on the spectrum at 25. He did badly at school and left at 16 with no qualifications. His first job was in a biscuit factory where the work was really hard. The routine, practical aspects of work were fine but the work culture was cliquey and the work force mainly women. He couldn’t find out where he fitted in and didn’t know what to say. After a couple of years he left to work in a joinery firm making mass produced kitchens. The work was very simple, boring routine on a conveyor belt for about 8 hours a day. But at this point Paul realised he didn’t want to do that kind of work and needed an education and to gain qualifications. |
At 21 he went to Weymouth College and did an Access to Jobs course. He learned how to fill in a cv and obtained 3 GCSEs in a year. That he could achieve this was a revelation after the failures at school. A further year on, an Access to Higher Education course gave him enough points to apply for University. Paul had been so anxious at school yet with a bit of support as an adult had achieved far more in just 2 years. Gaining a place at University felt like winning the lottery, although he originally had no intention of going. But over that summer he volunteered with a day group for children with learning disabilities such as Down’s syndrome and severe autism. He noticed certain similarities in features such as their need to keep their space quite safe, their need to focus on particular things, their passion for jigsaws, puzzles and patterns. But the experience helped him decide that he wanted to work with other people - which had seemed the last thing he’d wanted to do when at the bakery. But working one to one and supporting a need was something he could do. He could recognise and work with stress in other people. So this volunteering experience helped Paul identify the type of work he wanted to do.
At age 23 he applied to work as a support worker looking after 3 people with severe autism/learning disabilities. The work was very interesting but very challenging and involved lots of night work and a long travel distance. Paul found the work itself was great, supporting young people practically and physically but the social side, work relationships and how to behave outside the care role was more difficult.
Paul’s next move was to become a support worker in an adult mental health team. The Dorset Health Care Trust at that time were seconding people to nurse training, which Paul took up, and during that three years he discovered Tony Attwood’s book on Asperger’s Syndrome. Looking at the traits eg recognising patterns, finding bright lights and loud noises difficult, not enjoying fiction etc things started falling into place. At the same time, recently married, Paul was having relationship troubles and was also concerned about starting a new career in nursing. So he contacted the National Autistic Society for help finding someone who could diagnose adults (he was aged 23/24) His GP was not particularly helpful and it was early days for adult diagnoses. Eventually he saw someone who gave him a piece of paper saying he probably had Asperger’s, but checking very carefully first if he did indeed want the diagnosis. Paul didn’t realise the implications it would have on his nursing career. He had just been offered a job as a staff nurse working with people with dementia but wasn’t allowed to start his job because the OT department weren’t sure he was safe to practise because he was on the spectrum. It was an anxious time waiting for the OTs to contact the person who had done the assessment and to eventually confirm Paul was safe to work. There was a lot of prejudice and ignorance about the condition.
When he did start work as a staff nurse (Band 5) Paul’s career was, as he described it, a little bit rocky. After 2 years he was becoming very stressed, anxious and depressed so reverted to being a support worker. After re-couping his energy and passion for the job and returned to a staff nurse position. This became a repeating cycle, The 3rd time he worked as a staff nurse he was managing a unit for people with dementia. He really enjoyed the job but it was managing and interacting with people that was difficult, leading once more to depression, anxiety and exhaustion. Despite having the piece of paper with his diagnosis Paul had never understood what the diagnosis meant, what the difficulties were or learned about strategies. It was just a label.
By this time Paul’s nursing career had failed – after 12 years he had ended up as a support worker in the department he used to manage. His marriage had failed for similar reasons, poor communication etc. He didn’t know himself and was just “winging it” He didn’t know what support he needed. At 37 he was in a reflective state and needed to learn about himself, to gain more detailed understanding and some expert knowledge, to make life more manageable again. Looking back he realised the original assessment had been poor – the diagnosis on its own had been unhelpful.
During his marriage Paul had come across Maxine Aston who writes about relationships and he read The Other Half of Asperger’s. He and his ex wife travelled to the Midlands to see her to obtain another assessment. They did an exercise called The Mind’s Eye Assessment trying to determine people’s emotions from photos. For Paul it seemed impossible and each card took ages to assess, but his wife did it straight away. Paul realised why he couldn’t understand people’s feelings and that he just looked at physical details on someone’s face. Maxine agreed Paul fitted the criteria for an ASC and he began to understand how his AS was affecting him. Previously he had only understood things intellectually and had missed emotional needs and subconscious messages. This explained why things had gone wrong in his marriage. The process had identified a gap in his self-knowledge. Paul struggles to recognise his own feelings, relying on others to tell him how he’s doing. This is described as alexithymia – a difficulty in recognising your own emotions, thoughts and emotions. Not being able to understand others’ emotional needs unless they are explicit explained some of the difficulties Paul had encountered in his nursing career as a manager. Maxine also helped Paul understand that although he wasn’t depressed at that time he was emotionally exhausted and hadn’t considered how important his own energy levels were.
After a break in his nursing career of about 6 years Paul went to work for Dorset Mental Health Forum, initially part time, where he is now. DMHF employs people who have lived experience of mental health conditions, including some on the spectrum. Staff use their lived experience to help and support others. Paul found this liberating and discovered others had had similar work experiences to him. The Forum has been going about 20 years and employs 65 people, many part-time. The peer support role is to support others with their well being and to help them identify what they need. It’s OK to ask for support but you need to understand yourself first. Paul thinks you often teach best what you most need to learn. He now works 4 long days a week. Based on his work history, one of the things he recognises and needs to be determined about are recognising his own energy levels eg he finds it difficult to change focus from one task to another and going from one meeting to another. So he tries to take 20 minute breaks between tasks otherwise he becomes exhausted. He has also learned his energy levels vary greatly throughout the day. Mornings are better so he tries to do tasks that require communication, especially one to one, in the mornings. Another thing that has become clear is the importance of generally looking after yourself: not having an unhealthy relationship with food, not drinking too much; doing those things which help you to function well and have more energy such as exercise and good sleep. These are crucial and Paul had previously ignored hem but they made a huge difference when he put them into practice. Calendar management is important because it can be challenging to plan your day, identifying priorities, not just in work life but in all aspects of life. This is an aspect of executive functioning ( the organising, prioritising and planning function of the brain) which can be challenging in AS. Paul explained he has no sense of psychological time, finding it difficult to even imagine tomorrow. This also makes it difficult to accept kind words from others looking forward to better times. Everything is of the moment. At work if something is not written down he can’t work towards it. Paul is also dyslexic so writing things down can be difficult and things can be missed.
Within the context of his current job Paul has taken on board several lessons. He tries to manage his energy levels and to be mindful of how he is doing, asking for feedback. His boss can help with this and his workload can be adjusted if it is becoming too much. These efforts have succeeded as in the last 6 years he has lost only one month off sick and is working almost full time. But there has been lots of asking for support and asking for/recognising what he needs. Paul can now use what he has learned to help support others. One staff member who is on the spectrum helps support people in employment, who are struggling or who would like to be employed but find it difficult, and Paul in turn supports him.
The DMH Forum also run the Recovery Education Centre courses, including a course on Asperger’s Syndrome. They have an advocacy service and an employment service. For more details see http://www.dorsetmentalhealthforum.org.uk/
The meeting finished with a range of questions from the group and a general discussion of issues raised. We are very grateful to Paul for once again sharing his experiences with us so openly and having the courage and commitment to speak about his own difficulties. Many people were able to identify with the challenges he has met and the lessons he has learned and will be able to apply them in their own lives. This was a very worthwhile evening and we look forward to seeing Paul again in the future.
|Next DAAS Meetings||
Tuesday 21st March 2017|
Venue: Bournemouth University Room K103
Topic: Expanding Friendships & Dating Etiquette – Sandy Teal
Tuesday January 17th Venue: Bournemouth University Room FG06 Topic: A New Year Quiz + Adult Autism Study
|Thank You||A big Thank You to those of you who volunteer to help out at our meetings. We couldn’t operate without you. Please consider if You too could offer to help – especially to join one of the rotas (Welcome Desk, Refreshments) to set up the room, and to put it back to rights, or to act as occasional hosts. Full support will be given. Please see Diane or Steve.|