Held on

Wednesday, 10^th October 2007

at The Centre for the Deaf, King Square, Bristol

Present: Diana Bates, Diana Elliott, Mary Fitchett, Jenny Griffin, John and Bet Haskins, Murray Hennell, Sophia Hughes, Peggy Kinch, Penny Millar, Jenny Nicholas, Marina Parrett, Chris Peach, Margaret and Geoff Pegden, Melita and Martin Rowe, Frankie Sahni, Neil Taylor, Maggie Williams, Liz Wood, Margaret and Terry Wright.

Apologies: Charlotte Cooper, (Community Psychiatric Nurse, Avon and Wiltshire Mental Health), Anita Dixon-Lewis, Isabel Gifford, Chris and Francis Harries, Lesley Harrison, Angie Robbins (Help2 Family Project Officer), Cathryn Wilson and Jayne Worrin (specialist autism service within outreach team of Hayes Community Services),

Wednesday, 7^th November 2007 at 8.00 p.m.

by Barbara Maines, Educational Psychologist, Writer and Publisher

at Ravenswood School, Pound Lane, Nailsea

Contribution £5 Parents, (free to individuals with ASD)

To book a place, send payment by 29^th October to Mary Marsh, NAS Events Coordinator, 1 Woodview Drive, Cleeve, BS49 4NN. Cheques should be made payable to: NAS North Somerset Branch

E-mail northsomerset@nas.org.uk

Tuesday, 12^th February 2008 at 10.00 a.m. – 1.00 p.m.

at the Royal Hotel, Weston Super Mare

Contribution £15 parents, (free to individuals with ASD)

E-mail nasnorthsomerset@hotmail.com

6.00 p.m. – 8.00 p.m. on the second Wednesday of each month

at the Lynx Centre, Weston Super Mare

Wednesday, 31^st October 2007 at 7.30 p.m. for 8.00 p.m.

by Bill Cosgrove of A4E

at the Community Centre, Market Road, Highbridge

and on

Wednesday, 28^th November 2007

also on Saturday, 3^rd November 2007, 1.00 p.m. – 4.30 p.m.

Somerset Branch will share a stall with the Lynx Centre at

Burnham on Sea Lions Club Annual Bazaar at

The Methodist Hall, College Street,

Burnham on Sea

For details of the above three events, contact Campbell Main on Tel: 01278 788776

Marina Parrett has taken over Efi’s role as Social Programmes Manager for the time being, and is maintaining and encouraging the expansion of social groups (for those aged 18+).

As well as the ongoing Bristol pub social group which meets once a month on a Tuesday, a quieter group is almost ready to be launched. Prospective members have said they do not want a pub venue and Marina will discuss with Jenny Griffin the possibility of using the Centre for the Deaf as a venue. Jenny runs the family social club there on the first Sunday of each month. Groups are also running in Cheltenham and Yeovil and it is hoped to set one up in Bath.

Please contact Marina Tel: 0117 974 8425 or 0777 0687 009 for details of these, and of The Network, the social group organised by students of Bristol University. Marina would always like to know beforehand if a potential new member would like to attend a meeting. Contact Jenny (Tel: 0117 909 0598) about the Sunday family social club.

As you know, the fact that our people often fall through local services is unacceptable and contrary to the intention of government policy. Although a diagnosis of ASD does not automatically justify access to services, when people are ineligible, councils should risk assess their situation to help with planning and developing preventative services. All local authorities should allocate someone with specific responsibility for this. (‘Better Services for people with an Autistic Spectrum Disorder’ by Judith North)

So far, we have the names of those in Bristol and South Gloucestershire.

In Bristol, they are: Cathy Morgan (Head of Service – Older People/People with Physical and Sensory Impairment) and Jocelyn Mignott (Head of Service, Learning Difficulties and Provider Services, Tel: 0117 903 7859). You can contact them at Bristol City Council, Adult Community Care, P.O.Box 30, Floor 3, Amelia Court, Pipe Lane, Bristol BS99 7NB.

In South Gloucestershire, it is Dave Crook, Head of Services (Operations). He can be contacted on Tel: 01454 865907 or at South Gloucestershire Council, Community Care and Housing Department, St. Lukes Close, Emerson Way, Emerson Green, South Gloucestershire BS16 7AL.

Chris Peach pointed out that Alistair Darling has increased the allocation to Adult Services to address help for those with an ASD. If you live within these authorities, and have an unresolved problem, you should write to these named representatives, sending a copy to the Chief Executive of the Council.

Chris hopes that our branch will develop stronger links with local authorities, which hopefully will start with the campaign for adult services that the NAS is about to launch – our contribution to this is discussed later and we will have the particular support of Marina during the campaign and in the future.

Chris hopes to establish a link centre in Bristol, which would serve as a focal point for information, but although the NAS could pump prime it initially, it would need an income stream from Bristol local authority to keep it going. Such a centre is almost ready to open near Cheltenham, serving Gloucestershire, and as you know, the Lynx Centre at Weston Super Mare is up and running.

This is organised by Maggie Williams, an Occupational Therapist, who also runs the Breakthrough Club in Clevedon on Thursday evening. The Skills Club helps to develop fine or gross motor skills and co-ordination, handwriting and key-board training. The club is for children, but Maggie is able to offer an assessment for adults (£40) to help with problems ‘left over from childhood’. Contact Maggie on Tel: 01934 419822

A reminder of this excellent, nation wide, free confidential telephone support service organised by the NAS for parents and carers of a child or an adult with autism or Asperger Syndrome. The service is provided by volunteer parents who all care for someone on the autistic spectrum. Telephone 0800 9520 520 and leave a short message outlining your problem and a time when it would be convenient for a parent to ‘phone you back. Nicole Rae has just been appointed Parent to Parent Service Coordinator, you can contact her at the NAS Nottingham Office, Tel: 0115 847 3516.

Trusts ‘R’ Us are a group of families who care for someone with an ASD, often with challenging behaviour, at home with support funded by Direct Payments. They have loosely bonded together and recruit and train their own support staff. Jackie Clarke, Tel: 01275 835074 would be happy to talk to any parent who is considering this route of care. (Jackie came to our meeting on 7^th May 2003, with our speaker Alison Heaton, the Joint Commissioning Manager for Health and Social Services in Bristol, so some of you may already have spoken to her.)

Jackie Edwards has been appointed as one of three Carer Co-ordinators in the South West. Jackie is interested in all issues and concerns of those caring for anyone with a learning difficulty. You can contact her on Tel: 01934 876743.

You may not have come across Homes Caring for Autism Ltd., who now have three fairly local houses, including one eight bed house in Weston Super Mare. You can see their details on www.homes-caring-for-autism.co.uk or contact them at Unit 1, Churchill House, Bridgewater Court, Oldmixon Crescent, Weston Super Mare BS24 9AY. Tel: 01934 429448.

Over the last year, the NAS have been working on a new, improved look to appear more welcoming and inclusive. They also want to ensure that communications are shaped by members and by people on the spectrum and their families. They will do this via their magazine Communication (very informative and delivered free four times a year to NAS members). By making the brand more distinctive, it is hoped they will be better able to raise awareness and understanding of autism, attract more members, support and funding

and have even more influence with decision makers,

The new NAS Awareness Campaign – think differently about autism - will launch on 29^th October with a week of activity across the UK. It will be the start of a comprehensive campaign to significantly change public attitudes of autism, and to highlight the work of the NAS. The report that will be issued with the launch of the campaign will highlight poor public understanding, as while the majority of the general public do not really understand what autism and Asperger syndrome mean to those living with the condition, and to their families, the NAS will struggle to get the political attention that autism should have, resulting in a lack of services and funds.

The aim of this campaign is to create a more autism-friendly country. There will be a touring photo exhibition. This will try and show the public the world through the eyes of people with autism and their carers. The NAS hopes that the first few months of this campaign will create a strong platform from which they can start campaigning, in early 2008, for access to support and services for adults with autism.

This campaign is therefore vitally important to our people and we must do what we can to support it, especially as we are the only (I think) adult NAS group in the country.

The Petition

The UK government has signed up to the new UN Convention on the Rights of Persons with Disabilities. However, as the NAS Campaign Manager said ‘The government must ensure that it delivers on its commitment with increased resources’. We can therefore ask people to sign the NAS petition, calling on the government to ratify this new UN Convention., which requires it to ‘promote, protect and ensure the full and equal enjoyment of all human rights by persons with disabilities’.

If you weren’t at the meeting on 10^th October, there will hopefully be a copy of the petition enclosed. Please photocopy as many copies as you will need, and return the completed sheets to the NAS by the end of January 2008 (address on reverse of petition sheet). You can read more about the UN Convention online at www.un.org/esa/socdev/enable/conventioninfo

You can also sign up on-line at the Campaign Microsite, at www.think-differently.org.uk

which will go fully live on 29^th October.

If you visit the website www.think-differently.org.uk and sign up to the think differently about autism campaign, you will be able to receive regular updates about the campaign: if every one of our supporters emailed just one of their friends, that would add up to thousands more people who were thinking differently about autism.

The NAS also is developing a presence in MySpace. Check out www.myspace.com/nationalautisticsociety The NAS are on Facebook too. If you want to set up your own profiles, visit www.myspace.com or www.facebook.com and follow the step-by step guide. If you need help, contact the NAS at thinkdifferently@nas.org.uk

If you would like leaflets on ‘What is Autism’ and ‘What is Asperger Syndrome’ please let me know and I’ll send you some. The NAS have also produced a leaflet on creating autism-friendly workplaces (and schools). Again, please let me know if you’d like some.

It was felt that the most beneficial thing for our families, and for ease of mind when we are not here, would be the appointment of a very flexible Family Support Worker.

To this end, it was decided to invite those from Bristol City Council who could hopefully support us in this to a meeting early next year. (Subsequently, it has been suggested we invite Peter Hammond, Deputy Leader and Executive Member for Care and Communities, and Cathy Morgan and Jocelyn Mignott, Bristol’s named ‘champions for ASD). The format of the meeting has yet to be decided: one suggestion is that various members of our group could briefly outline their experiences, each under a particular theme, such as Diagnosis, Housing, Employment, Social Isolation, Challenging Behaviour and Family Support, showing the extent and effect of unmet need that exists.

We would also need to prepare written evidence of need, summarising people’s experiences, and offering financial estimates to show that preventative action and meeting the needs that members’ experiences exposed would be financially beneficial to the Council in the future.

I realise that this will be focussed on Bristol – and not all of us live in Bristol - but it would be a start with which to approach other local authorities.

We would like to hold an earlier meeting in January to plan how we can best present evidence for the need for a Family Project Worker. This meeting has been provisionally booked for

when Clare Paine and Jayne Worrin will talk to us about what they do and how it is funded. (Clare works with adolescents and Jayne is developing an outreach service.) Apart from being of great interest to us, their work in supporting families should help us focus on the specific services we are seeking and how it could be funded.

We need as many people there as possible to contribute to this information-gathering session. Please bring friends and family. We will be writing to all those NAS members within the Bristol post code area (about 230) to invite them to join us, especially if they have adult children. We do apologise if you, as a long-standing member of our group, receive one too – although we will try to prevent this.

We are very grateful to Diana Elliott, who has been able to donate £75 to our funds, the proceeds of collecting tins she has placed in local shops.

Waterloo Road – BBC 1

Two members have recommended this series on BBC1, Thursday evening at 8.00 p.m., as it includes a depiction of the difficulties a teenage pupil with Asperger’s syndrome faces at school, and how the school addresses them.

You may like to visit the Toll House Gallery, at the pier, Clevedon, which is exhibiting a retrospective collection of paintings by Leonard Gifford from 3^rd - 31^st October. Telephone Isabel, 0117 924 9360 for more details.

This looks far more optimistic, as the very good news is that Diana Elliott has said that she hopes to be able to gradually take over the roles of branch officer after Christmas.

I’m sure Diana would welcome any offers of help and support.

Therefore, especially in view of the meetings in support of the impending campaign, we will defer our AGM until later in 2008.

We will confirm the meeting on 9^th January, 2008 and let you know the date of our later meeting (hopefully in early March) as soon as possible. In the meantime, please, please contact us with your ideas and suggestions for anything our group can do to support the campaign for adult services. Please ask as many people as possible to sign the petition, and let me know if you would like any leaflets on Autism and Asperger Syndrome to distribute.

Thank you, you definitely deserve a cup of tea and a chocolate biscuit if you’ve got this far.

With very best wishes,

Margaret and Terry Wright

Tel: 01275 842258

E-mail: MargaretTAWright@aol.com

Address: 65 South Road, Portishead, Bristol BS20 7DY.

-------------------------------------------------

at The Centre for the Deaf

at 7.30 p.m.

When Clare Paine and Jayne Worrin will talk on their work

Meriel Daniels, Manager of The Brunel Centre also hopes to attend

We will confirm this date later, but please put it in your diaries.

It will be an information gathering evening so that we can plan how best to support our request for a Family Project Worker