Not Stupid

by Anna Kennedy

  Weekly guidance counselling sessions are invaluable and provide students with the opportunity to raise any subject they choose in a private, safe and supportive forum. Students also have the option of an additional weekly session with a psychotherapist as this is particularly beneficial to those students who require Cognitive Behavioural Therapy (CBT).

  I have to say that working with my new colleagues from Hillcrest, Barry Sampson, Roger Colvin, Richard Greenwell and others, has proven to be a real joy. As I have said earlier, we have formulated some very exciting plans to expand our services for people with autistic spectrum disorders, and there is no doubt in my mind that the future is now very positive indeed. My former colleagues have now moved on, and Sean is no longer involved in the company. Sean is one of the few people to successfully represent someone with Asperger’s Syndrome in an Employment Tribunal, and he will continue his legal work; he will also be spending a lot more time developing his interests in financial markets.

  Meanwhile, we have been further encouraged to learn of a potentially helpful Autism Bill which has been put forward by Angela Browning MP who for many years has championed the rights of individuals with autistic spectrum disorders. If this Bill becomes an Act, it will be an extremely welcome piece of legislation. At the time of writing, the Bill is only at the second reading stage and, even if it gets the appropriate support in Parliament, will not come into force for quite some time. Nevertheless, I and the staff at West London Community College have been particularly pleased to read that the Bill appears to be focusing around independent living and daily life skills as these issues have, for the past year, been our main focus of learning. Our students have been thriving in a culture of independence and choice. Yes, academia is important but if choice is not made available, it is not a person centred or client led service.

  We have been delighted that the Conservative and Liberal Democrat parties have both pledged their full support for the draft Bill should one of their MPs be selected in a Private Members Ballot. This makes it all the more important that people contact their MP to ask them to enter the ballot for Private Members Bills and to take on the Autism Bill if successful.

  We’ve been urging organisations to pledge their support for the Bill which aims to strengthen information about the numbers of people with autism and their needs in order to improve local planning and commissioning of services. It aims to improve inter-agency working to ensure effective transition for disabled young people who are moving from child to adult services and, finally, it aims to ensure access and appropriate support and services for people with autism in adult life.

  Readers will, by now, be fully aware that this is a major issue for Sean and me. Like other parents in our position, Sean and I are determined that everything possible is in place to help our children, Patrick and Angelo, cope with life, especially in the event of anything happening to us! The transition from school to adulthood for young people with autism demands a high degree of inter-agency cooperation, and this is where difficulties often arise.

  Furthermore, eighty-six per cent of local authorities say that if they had more information on autism prevalence in their area it would help them with long-term planning. As things currently stand, adults with autism are often unable to access the right support and, consequently, become dependent on their families. Sixty-one per cent of adults with autism rely on their families for financial support, while forty per cent live at home with their parents.

  Structural barriers prevent adults with autistic spectrum disorders from accessing the support they so desperately need. Local authorities tend to provide services via specific teams, with the teams categorised into client groups. People with autistic spectrum disorders will usually come into contact with the learning disability team and/or the mental health team. However, as autism is a developmental disorder, it is not appropriate to categorise autism as simply being a ‘learning disability’ or a ‘mental health problem’. Failure to understand the needs of people with autism means that many individuals, particularly those with Asperger’s Syndrome or high-functioning autism, find themselves falling through the gap between services that refuse to take responsibility for them.

  A lack of understanding of, and training in, autism means that the health and community care needs of a person with autism are not properly understood in an assessment; they are then unable to access the services they need, and the right types of support are also lacking.

  The top three types of support that parents and carers believe their son or daughter with autism would most benefit from are, according to surveys, social skills training (sixty per cent), social groups (fifty-six per cent), and befriending (forty-nine per cent) and yet there is a clear shortage of these types of support.

  If this Bill is passed through parliament it will make a difference to the lives of thousands of adults with an autistic spectrum disorder. Gaining the support of the Conservatives and the Liberal Democrats has been a major step forward.

  We are committed to raising the awareness of autism and Asperger’s Syndrome. Over recent months, three of our college students have developed a training package they can deliver to a variety of delegates, including social care professionals, company employers, parents and young people in transition. ASDAT – Autistic Spectrum Disorder Awareness Training – can be purchased by contacting the West London Community College.

  Looking to the future, we have to recognise that our students, like everyone else, have emotional needs that have to be met, particularly when it comes to relationships. A group of students at the college devised and developed a friendship and dating agency which they called Friends 1st and, to date, there have been four successful events with up to thirty attendees at each. However, unbeknown to us, a Christian organisation also calls itself Friends First and they informed us that we should change the name of our dating agency as they had been using it for the past nine years. This came as a huge blow to the students who had really worked so hard on this project and had really established the name.

  For those on the autistic spectrum, change doesn’t come easily but I was impressed by the way the students decided to tackle the problem. Like true professionals, the students went back to the drawing board and announced a competition for all the members to come up with a new name for the group and offered a prize for the winning member. We await the result.

  A parent and carer support group has now been established at the college where it is hosted every month. This is a free provision for any parents or carers of a person diagnosed as being on the autistic spectrum and 16 and over. We’ve made this service available to everyone, regardless of the borough in which they reside.

  So, as you can see, since going into partnership with the Hillcrest family, we are going from strength to strength and the future of our centres is looking far rosier than it was a few months ago. I now feel that we are working as a cohesive team and there is hardly a limit to what we may achieve.

  News of our work has been spreading worldwide. In recent weeks I have been approached by parents and professionals in the United Kingdom, USA, Canada, Japan and Barbados. I have been giving talks all over the country about our work; been featured on a breakfast show on Irish television; spoken at a national conference and have been invited to return to speak at next year’s conference.

  The fact that so many people are now sitting up and taking notice of what we have achieved, and that many of them wish to replicate our work, is immensely satisfying, but we do not intend to rest on our laurels.

  Another initiative we are developing is a national website - AnnaKennedyOnline.com - which is due to be launched in 2009. This will be a charitable website with up-to-date information on autism research, parliamentary updates, places to visit for holidays that are autism child friendly, and Sean will have a legal section that will advise people visiting the site of any changes in education law, employment law etc. Basically, it is intended to be an all-singing, all dancing website concentrating on autism issues but with
other interests as well.

  Looking forward, our aim is to maintain the progress we have made as a family and with our work to date, and to ensure our boys and the students in our centres are equipped to live the rest of their lives as fully as possible.

  It’s been a long, hard struggle with many setbacks and obstacles along the way but, with the support of other dedicated parents, directors, shareholders, businesses and well-wishers, we have achieved an awful lot over the past ten years and I’d like to think that in another ten years I’ll still be doing what I’m doing now – though, hopefully, without quite so much stress!

  Sometimes, when I’m really exhausted I sit back and wonder why we’ve been doing all this, but then I only need to look at Patrick and Angelo to know the reason. They’re unable to fight for themselves, so it’s up to us to do it for them. However, we do not intend to rest on our laurels. There is still more to do and we will not rest until we have done it.

  That much we owe our boys and others like them.

  Acknowledgements

  There are so many people who have helped us along the way who deserve our heartfelt thanks – and I’m sure there must be many more kind people and organisations who have contributed to Hillingdon Manor whom I may have forgotten and to whom I can only apologise.

  Thanks, therefore, to the following individuals and organisations:

  Esther Rantzen

  Thank you, Esther, for agreeing to become patron of the school and HACS, for highlighting the issue of autism, and for your support. Also, congratulations on your participation on the ITV programme I’m a Celebrity, Get Me Out of Here! You proved that a 68-year-old woman can cope just as well as the younger generation in the jungle amongst all the spiders and snakes. You were brilliant and we’re all very proud of you! I hope you were able to draw support from the pictures our pupils drew for you.

  Sean, Patrick and Angelo

  Thank you for introducing me to autism! It’s been a roller-coaster ride!

  Coral Kennedy and Pamela George

  Thank you for moving down from Middlesbrough to help us through some tough times and for all the babysitting sessions.

  Maria Luisa, Tony and Nico Davison

  I’d like to thank my sister and her husband for listening to all my moaning over the telephone and for continually cheering me up. Thank you, Nico, for being a really great cousin to Patrick and Angelo. I’m sure Maria Luisa and Tony must have learned an awful lot about Asperger Syndrome when Patrick stayed with them for a week!

  Maria and Tony Sammarone (Mam and Dad)

  Thanks for supporting me and particularly to Mam for listening to me.

  Tullio and Nikki Sammarone

  I’d like to thank my brother and his wife for their support and all they’ve done for the boys, particularly Patrick, as he’s always saying how much Tullio lifts him up when he’s feeling miserable.

  Aunty Anita and Uncle Ken

  Thanks for putting me on the train to London all those years ago!

  Norma

  Norma looked after Patrick when he was placed in an incubator shortly after his birth. She has been my good friend ever since.

  ‘Aunty’ Zita and Ted Harrowing

  Aunty Zita telephones me every single day without fail at 6.45 p.m. on the dot. She never judges me and is the nicest woman anyone could ever meet. She’s Angelo’s godmother and I feel as if I were the daughter she never had. Thanks, Ted, for your friendship.

  Hillingdon Autistic Care and Support

  HACS was the seed of all we have achieved. My thanks go to all involved.

  Anne Robinson

  Thanks for starting HACS with me.

  Our Lady of Lourdes Church, Uxbridge

  This is where we first set up our HACS meetings. Thank you for letting us have the use of the hall free of charge.

  London Borough of Hillingdon

  Thank you for giving us the keys to the school (eventually!). I have to be honest in admitting we have been very lucky to have dealt with you, as there are not many boroughs that would have done what you have done for us over the past few years.

  Mary Milne, head of client services, Hillingdon Borough Council

  You were one of the key people at Hillingdon Borough Council involved en route to our getting Hillingdon Manor. Thank you so much.

  John Randall MP

  John has been on our side even before Day One! Thanks for fighting our corner for us and for keeping in contact.

  John McDonnell MP

  Like John Randall, John has continually offered his support and has written many letters on our behalf to the council.

  Councillor Ray Puddifoot

  Ray has supported our projects at the school, the residential home and the college. Thank you for this consistent support.

  Derek Jones

  Thanks for giving me respite for a few hours a week when setting up the school and in the early days.

  Christina Bertolucci

  Thank you, Christina, for supporting Angelo and Patrick in the early days and for your invaluable workshops on autism.

  Alex and Sally Honeysett

  It’s been a roller coaster, Alex! Thank you for supporting the project right from Day One. Thank you for your commitment to the cause.

  Dave Clark

  Thank you for your financial investment in Hillingdon Manor – even though you have not had children affected by an autistic-spectrum disorder. Thanks for believing in what we’ve been doing and for your continued support.

  Barclays Bank plc

  We went to a lot of banks and all of them except Barclays told us we had a nice project but to close the door on the way out. Barclays didn’t, so thank you very much. Barclays was the bank that said ‘yes’!

  James Coombes

  Formerly of Barclays Bank. Thank you for wording the letter paving the way for our loan to buy Hillingdon Manor in the way that you did.

  Theran Dhatt

  Our Barclays Bank manager. Thank you for your ongoing support.

  Graham Reynolds

  A solicitor with a son with autism, Graham was instrumental in the setting up of Hillingdon Manor School. It was Graham who put us on to Barclays Bank when all other banks were declining to help us purchase the school.

  Nicholas Smith

  Nicholas works for Barclays Bank. He has undertaken many fundraising activities for the school and HACS. A really nice guy for whom nothing is too much trouble.

  Tony Kohn

  The company secretary since Day One. Thank you for your support and your honest opinions.

  Cliff Pearson

  A parent of one of our pupils, Cliff can work magic. He is our maintenance man whom we just wind up and let go.

  Beverley Williams

  A very supportive parent of two children with autism. We’ve laughed and cried together, and shared scary stories about things our kids have got up to. I wish her all the best for the future.

  Nigel Seagrove

  After hearing me speak on the radio about Hillingdon Manor, Nigel got in touch and offered to supply us with all our signage requirements free of charge. Thank you. Let’s hope you can make enough money to buy that Ferrari you’re always going on about!

  Bob Hillier

  A parent of a child with autism, Bob was very supportive of our efforts to start up Hillingdon Manor School and became the treasurer of HACS. Such a likable man, Bob has since passed away. He is greatly missed.

  Terry Crick

  What a lovely man. A master of many trades who helped us so much to keep everything in good repair. Terry passed away a while back and, like the late Bob Hillier, he is sadly missed.

  Graham Snoad

  A former deputy head teacher at Hillingdon Manor School, Graham has a son with autism. Even before we opened the school he rolled up his sleeves to help with the painting. He has since moved on to work at a mainstream school but he has ensured Hillingdon Manor has links with his new school.

  Councillors Catherine Dann and Peter Ryersonr />
  Thank you, both, for speaking up for the school when we needed your support.

  Hillingdon Rural Centre

  The centre, run by people with learning disabilities, gave us lots of plants to make Hillingdon Manor School’s gardens look so nice.

  Humphrey Hawksley

  A reporter on the BBC2 Newsnight programme, Humphrey has produced several really good television features on the school and frequently gets in touch for updates.

  Hasbro

  The toy manufacturers have donated lots of toys, games and puzzles and staff have held several fundraising events.