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autism london - draft 4 by dfsiopmhy6


									    autism london
Providing support for those affected                                              Supporter News
by autism and Asperger syndrome                                               Spring 2009 Bulletin

Dear Reader
                                                                       In this issue…
As always it has been a great pleasure working with                    •   Message from the Board
everyone at autism london over the past few                            •   Salisbury Road update
months, the work of PAN, ALAG, the Helpline, the
                                                                       •   Autism Policy support
Support Services and of course all that Salisbury
                                                                           services update
Road provides for its residents!
                                                                       •   ALAG corner
Since our last newsletter so much has been achieved                    •   Rain Man interview
in all our autism/Asperger services. We have also                      •   Upcoming news, events
been putting together an autism strategy for mcch                          and diary dates
and autism london, this will help us work to meet the
future needs of people who will use our services now
and in the future.

It is our commitment to ensure that the services we
                                                                      STOP PRESS:
provide are of the highest quality and of course fit for              To mark the United Nation’s
purpose. Over the past few months we have                             declaration that April 2nd is
embarked on improving the accommodation at                            World Autism Awareness
Salisbury Road, with newly decorated bedrooms and                     Day (WAAD)
living space, new bathrooms, new kitchen and the                      Stand up for Autism
previously redesigned and newly planted bedroom,                      Thursday April 2nd 2009
the house looks a different place                                     The purpose of this day is to
and the people who live there                                         raise awareness of autism
feel it is more homely. On top of                                     across all public and private
the environment improvements,                                         organisations and within
person centred plans and                                              society as a whole. You can
support plans have added to the                                       Stand up for Autism too, by
expert support our staff are                                          uploading your photos (you,
providing.                                                            your family, your friends) to
                                                                      the web photo library by
Thank you for your continued support.                                 going to:
Jacky Hammond                                               
Area Director

autism london is a company limited by guarantee registered in England No. 2669072
AS10 Rose Cottage, Aberdeen Centre, 22-24 Highbury Grove, London N5 2EA
t 0845 6037954 e
Registered charity no. 1009720. Part of the mcch group.
02                                                                         Spring 2009

A message from our Board
                               I am Ann Cooke and I have been a member of the
                               Board of autism london since its merger with mcch.
                               My first contact with autism services came in the
                               1970s when I worked at a school in Kent. We had
                               one pupil who had been diagnosed with autism and
                               we were fortunate to have Dr Lorna Wing visit the
                               school. This made a great impression. I knew little
                               about the condition then but when I went on to work
                               for a national charity supporting parents my
                               knowledge increased. It helped me to support
                               parents in accessing statutory services and campaign
                               to fill the gaps in provision. I joined the Board of
                               mcch in 1995 and I am now Chairman. It gives me
                               great pleasure to meet those who use our services
                               and learn of their achievements and hopes for the
                               future. The independent living opportunities that we
        Ann Cooke              dreamed of years ago are now a reality. Although
                               services have certainly improved in the last 30 years,
                               with the support of our excellent staff I know we shall
                               break even more new ground in the future.

PAN Update
The Partnerships in Autism project (PAN) welcomed in 2009
with a stakeholders group meeting on Thursday 15th January.
Mark Lever gave a very informative talk on his first year as
Chief Executive of The National Autistic Society and Fiona
Kerr, Chief Executive of the Mental Health Helpline
Partnership spoke about the development of the partnership.
The next meeting is scheduled for Tuesday 3rd March.

The Department of Health has set up an autism Strategy External Reference Group
(ERG) led by Elaine Hill who has been appointed the Specialist Advisor for Autism.
ERG is being formed in order to support the development of the Departments of
Health’s commitment to policy development to Adults with Autism Spectrum Condition
(ASC) including Asperger syndrome.

autism london has launched a refreshed and more interactive website. We are still
tweaking and updating the information and we will let you all know when we have the
forum up and running. If you would like any further information please email me at:

Maria Bremmers
Spring 2009
News from
We would like to wish everyone a very happy and         Our residential home in East
healthy 2009.                                           London provides seven adults
                                                        affected by autism with a
All the service users enjoyed the Christmas and         home in a safe and supportive
New Year festivities and enjoyed time at home with      environment.
their families.
                                                        The residential home opened
All the service users attended the mcch Essex and       in 1991. The property is
East London Christmas parties, where they enjoyed       owned by London & Quadrant
lots of good food, as well as the music and the party   Housing Trust and is managed
games.                                                  by autism london.

We are at present in the midst of building work as      This accommodation and
we are having our kitchen re-vamped, although it is     support scheme is an example
very disruptive at present we are sure it will be       of good practice and we hope
lovely when it is finished.                             that it will act as a role model
                                                        for organisations working in
Lesley Walker                                           this field.
Registered Development Manager
04                                                                            Spring 2009

Support Services Update
Welcome to our Support Services, we would like to
wish everyone a prosperous and healthy 2009. A big
thank you to those of you who have renewed your
supporter subscriptions for 2009 and for all the
appreciation you’ve shown for the support work
autism london continues to provide.

We ended 2008 with a wonderful Christmas party for all
our families, in partnership with KEEN London. There
was a huge turn out to see Father Christmas and every
child received a lovely present courtesy of The Walt
Disney Company, who very generously donated a huge
box of toys for the party! We also had face painters,
balloon artists, a Christmas Fairy accompanied by a wave
of bubbles, games, music and delicious food! A great time
was had by all and we look forward to seeing everyone
again for more fun next Christmas.

This year started with a very busy helpline, calls came
from families and individuals affected by autism who were
struggling to find support in a number of areas including
education, housing, diagnosis, support groups, respite, to
name a few. We have also had several requests for
commissioned outreach work from Local Authorities in
various boroughs who have asked us to provide autism expertise for the families they
work with. Call our helpline if you would like to speak to our support services.

Helpline 0845 603 7954 11am - 3pm Mon - Fri
autism london is looking for volunteers to work on the helpline on a
Wednesday or Friday. An understanding of autism issues is essential and helpline
experience preferable.

I have also been working with the Islington Partnership Groups on the Strategy for
Children and young people with disabilities and their families. A Disability Sub Group
has been formed to monitor the development of this Strategy which is headlined with;
‘Right services in the right place at the right time,’ ‘Do nothing about us without us’.
I have been invited to sit on this group so I’ll be feeding back to you on its progress.

I would like to take this opportunity to wish Dee the very best for the future in her new
job at Hackney Social Services. She will be missed by all of here at Support Services
but of course we will keep in contact with her and invite her to all our social events.

Support Services
Spring 2009
Fond Farewell to Dee
    I am sad to say that this will be my last contribution
    to the newsletter. I am leaving autism london
    after six great years in the charity. I wish to express
    my thanks to all the people that I have met during
    my stay here. I will miss not only my colleagues from
    the autism london office, but also the many people
    that I have met through my work as support officer.

    I will be working in Hackney with the Children In Need team from mid
    January. I value all that being a part of autism london and mcch has
    taught me. I will possibly see some of you at future events, as I will hope
    to volunteer my time when there is a need for an extra pair of hands. I
    wish you continued prosperity for 2009. Goodbye and thanks to you all.

                              mcch medway pathways to inclusion is a project that aims
                              to find new ways to bring about better outcomes for adults
                              facing chronic exclusion. Funded by four Government
                              departments, the project also works with autism london.

                              The project currently supports 14 people to access further
                              education, travel training, social skills, leisure, benefits
                              and health care. A new 12-week block of art/social
                              sessions are due to start on Friday 6th March called
                              Creative Pathways 2 and a training day for those involved
                              will be held on 5th March. For more information, please
                              contact Maryanne Boylan on 01634 821114.

New Autism Bill    Extract from The Guardian 22/01/2009  
The autism bill published today promises a brighter future for  
thousands of people, says Mark Lever, Chief Executive of the 
National Autistic Society. 
The first law to help people with autism came a step closer to 
reality today with the announcement that Cheryl Gillan MP (drawn             Mark Lever 
first in the private members' bill ballot) will take forward the           Chief Executive 
autism bill with the backing of 14 autism charities, including ours,   National Autistic Society 
the National Autistic Society (NAS). This is fantastic news for the 
over half a million people in the UK and their families who are affected by this serious, 
lifelong and disabling condition. Read the full article at:‐autism‐bill 
06                                                                             Spring 2009

                                       Alain English and                   ALAG
                                       Ethney Anderson interview 
                                       Adam Godley, star of RAIN MAN 
Rain Man by Barry Morrow, adapted for the stage by Dan Gordon, premiered at the
London Apollo Theatre, Shaftesbury Avenue, London 28th August - 20 December ‘08.

Our interview with Adam Godley, who plays Raymond Babbit, the autistic character in
the play and the "Rain Man" of the title. Adam is a highly experienced stage and
screen actor who has made appearances on London's West End and on Broadway,
and has appeared in films like "Charlie and the Chocolate Factory" (2006) and "The
X:Files - I Want to Believe" (2007).

How did you get the part?
I was asked to do it. I live in America and my agent called me to tell me about the
production. I read the script, spoke to the producer and the director and I said "I need
to speak to Josh Hartnett, the actor playing Charlie Babbit, Raymond's non-autistic
brother). Because we needed to establish that we could work together and that we
could establish the chemistry between the characters because without that you don't
have a play and the audience are just watching scene changes.

Did you have experience with autistic people or awareness of autism
prior to taking on the role?
None at all - I was totally in the dark. My first thought was I need to approach this
sensitively and responsibly, but also to serve the needs of the play because it's a
drama not a documentary.

How did you prepare for the role?
 I realized I needed to educate myself on autism so I read every book and watched
every documentary, including a recent one called "My Name is Sabine". I talked to a
psychotherapist in Los Angeles who is an expert on autism. This gave me an idea of
what autism is - an experience of the world in a different way. The psychotherapist
gave me a lot of tics that Raymond does in the play, including the 'stimming'. Autistic
people sometimes react to people as they react to objects and preparing was all
about getting my head into that place. Things like the lack of eye contact were
so useful - the only time I look Josh in the eye is when we're dancing - I'm in my own
world, a safe and comfortable place. I needed to understand being taken out of your
surroundings is a problem for someone severely affected by autism, as that is what
happens to Raymond in the play.

I went to Godalming to a residential care facility and I spent the day with four autistic
guys and a carer. I did this late in rehearsals so I didn't base my character on any one
person. I did have some leeway in developing the script. There comes a time where
as an actor you know a bit more about the character than the writer - because you're
inside him. The most important question for an actor is why, and if I didn't understand
autism, I couldn't understand the character.
Spring 2009
How do you keep the performance fresh every night?                       ALAG
That's something I needed to know about Josh, that he was not going            corner
to do the same thing every night - it has to be a two-way street.

The actor Kevin Spacey has likened long theatrical runs to playing a tennis match with
the same person for twenty years. Your wear the same clothes, you play the same
game but the ball rolls differently each time. So on stage you react slightly differently
each time to every line and every look, even though you're playing the same
character. The audience are more involved when it's alive that way - live theatre as
opposed to dead theatre.

How has playing the role changed your awareness of autism?
It has changed it radically. I am of the view that as an neuro-typical the way I
experience the world is not the only way, is not the right way but it is my way. We don't
all have to be the same - it's a gift to be able to respect and understand difference and
the play has deepened my understanding and respect for difference.

It's made me realise how important it is people know about this stuff and the better it
is for everybody when they do.

Has your performance in Rain Man inspired/provoked a reaction
(positive or negative) from members of the audience such that they
have contacted you or the producers with their feedback?
Yes - I have had a number of people coming up to me and have
all been very gracious. A guy whose mother calls him "Rain Man"
introduced me to his mother who told me it brought her back to a
time when he was less functioning. I've taken what I needed to
know in order to do the job but I would love to be a help in raising
awareness of autism.

Our thanks to Nimax Theatres for helping to arrange this
interview and Adam Godley for taking the time to speak to
us - it was greatly appreciated.

This adaptation of the successful 1989 film is successfully updated here for the stage.
The story concerns Charlie Babbit (Josh Hartnett) a car salesman who learns that his
father has died and that the bulk of his inheritance will go to Raymond (Adam Godley)
an autistic savant brother he never knew he had. Charlie kidnaps Raymond from the
care home where he has been installed and takes him on a road trip to persuade him
to agree to hand over his dad's money. In the process Charlie starts to bond with
Raymond leading to some kind of mutual understanding between the two of them.

Godley is fantastic as Raymond, nailing his character perfectly. He captures the odd
prosody, nervous stimming movements and random meltdowns inherent in people
with autism. He and Hartnett form a natural rapport on stage and the final moment of
connection between them is very moving.
08                                                                          Spring 2009

The value of an Asperger Interest                                        ALAG
                                          by John Harrison                    corner
Aspergers are known frequently to have special interests which they pursue
quite intensively. Frequently the interests are unusual, such as styles of letterboxes
or designs of drain covers. Arguably, many interests are “anorakish”, though really
there is nothing wrong with being anorakish provided you do not harm others in
pursuing such interests, e.g. by boring others with them when they are not interested.
I have the unusual hobby interested in vehicle registrations and edit a newsletter on
the subject called “1903 and all that”. A few years ago I asked myself the question
whether my hobby had any use I wrote an article in my newsletter, “The Value of our
Hobby”. I could point to various instances of helping friends sell marks off their cars
which they did not believe had any value (some were worth as much as the car). I
could also cite some more wacky cases where it had been useful, e.g. preventing a
friend who was then dabbling in buying and selling used cars inadvertently passing off
a 1974 car as a 75 one. The conclusion of the article was that the real value of the
hobby was not such practical value, but rather it was something we enjoyed and that
enjoyment has value in its own right. Since then I have become more involved in
helping classic car and cherished number owners researching histories.
Recently one of my newsletter readers was delving in the Hull registration archives
and discovered the potentially valuable registration, 1 RH was never issued. When
Hull started this series in 1962, they had started at 2 RH. I put a short item in the
newsletter reporting this. A copy of the newsletter is sent to DVLA and they picked this
up and decided to offer 1 RH at one of their auctions. It sold for nearly £¼ million
(registrations with two letters and a number 1 are much coveted and therefore
valuable, so this price might seem incredibly high to some, but it is comparable to
other similar numbers that have sold recently). Britain’s taxpayers should be grateful
I highlighted this omission! I can now report out hobby has a somewhat different
“value”! Arguably anorakish interests do have their uses!
  Spring 2009
ALAG Update by Desmond Meldrum                                         ALAG
ALAG (Autism London Asperger Group) is going from
strength to strength. In the beginning of January we
had a New Year’s social which was enjoyed by all those
who attended and last month we had a talk on
bereavement by John Harrison, a regular attendee of
the group. We are in the process of forming an event
planning subcommittee, which will hopefully mean that
we should have a fuller programme in the future. Next
month there will be a talk on money matters by Sarah
Hendrickx who has spoken to the group before and was
very well received.

The group meets on the early evening (6.30pm) of the first Tuesday of the month in
the Conference Room at the Aberdeen Centre in Highbury. These meetings last for
two hours and if anyone is interested in coming along they can contact the office on
0845 6037954 or email:

              New Seminar:
  Social Demands, AS & Coping Strategies
     Aimed at:     Parents, Carers, Professionals supporting those with Asperger
                   syndrome and AS individuals

     Date:         Monday 30th March 2009

     Venue:        RIBA London

     Speaker:      Wendy Lawson (Bss. Bsw(Hons) GDip(PsychStud) GDip(Psych)
                   is an adult with Asperger syndrome.

      You can download the booking form and flyer by visiting their site:
10                                                                                 Spring 2009

                                                            is a social networking site that
                             fers an
        Family Nights of                                    aims to help people with
       opportunity for low                                  learning disabilities and their
                        London theatre
    families to enjoy a                                     carers keep in touch and
                        £5 a ticket. The
    production for just                                     communicate with each other.
                        e children from
    group must includ          tact
                                                            Membership is FREE.
          the age of 6-16. Con
                        07 240 1248.
     Tracy Burke on 02                                         Specialist  
                                                          Outreach ASD service 
                                                      Seeking someone with experience  
                                                         of looking after children with  
                                                   high‐functioning autism to look after my 
 When? Saturday 6 June 2009                             11 year old daughter part‐time. 
 The challenge is to run/walk to raise               Potential candidate needs: a sense of 
 money for small charities. The challenge          humour, firm boundaries, equally able to 
 will be held in Derbyshire on the Monsal
                                                      go with the flow, intelligent, caring. 
 Trail for 10km. To find out more call 0207
 637 2264 or email
                                                       Approx 4 ‐ 6 hours work a week. 
                                         Contact Janine: 
                                                                     or tel:  
                     service in
      Autism specific on                                        020 8211 7977 
          Croydon/Sutt       :
                        a Waller
         Contact Katrin 7876233438                             mcch ExEL
                 00 t 0
   t 0208 544 89                                          2nd Anniversary Party!
                                                        Mon 30th March 2pm-6pm
                                                       Brandon Grove Community Club,
Newham House Supporting People recently                     Brandon Grove Ave,
opened the first supported accommodation                     South Ockenden,
project (3 self-contained units) for individuals             Essex RM15 6SB
with Asperger Syndrome in Newham. Special                 RSVP: Viv 01375 483736
attention to sound-proofing, space and colour
was an integral part of the accommodation            Penpal service for people over the
specification. There are communal facilities.        age of 16 years old with Asperger
                                                     syndrome. Register by visiting:

                 Anna Kennedy is a parent of two boys and is married to a man
                 with Asperger’s Syndrome. She has set up a school for children
                 affected by autism, an adult college, and out reach support
Spring 2009
           FREE Workshop
          for Parents with
     children on the Autistic
       Spectrum to provide
       practical behavioural               New resource: www.w
 strategies, legal information             this new website evolve
       to guide through the                                             s, the aim is to
                                          provide a much needed
                                                                         service for
   statementing process and               parent/carers, professio
                                                                        nals and those
 practical sensory techniques. on the spectrum.
           4th March 2009                 Please browse the follo
          9.30am – 2.30pm       
                                                                       wing links:
             Dragon Hall                  And if you are diagnose
                                                                       d, go to
         17 Stukeley Street    
         London, WC2B 5LT                Also available from th
                                                                    is site is our book
                                         entitled Aspergers For
                                         This book was written
                                                                     after a great deal
                                         of research had been
 The Royal Society of Medicine                                      carried out by
                                        interviewing a group of
 is organising the following                                          adults over a six
                                        month period. The book
 conferences:                                                          has been
                                        written by Rod Morris
   Autism on Monday 23 Mar 09                                      and supported by
                                        Peter Wade. Rod is a
   at the RSM.                                                     qualified
                                        professional educator,                                  diagnosed with
                                        Asperger Syndrome an
                                                                     d Dyslexia.
   Autism spectrum disorder -
   linking research and practice
   on Wednesday 25th Mar 09
   at Royal College of              Valuing People Now ‐ A Three Year Strategy for 
   Surgeons, Edinburgh.             People with Learning Disabilities presents a new vision for improving services for people with 
                                    learning disabilities across health, housing, 
Sharing Good Practice               employment and community care services. 

National Conference                 Visit the news section of the mcch website to 
Thurs 26th Feb ‘09, Central         download a copy 
Hall Westminster, London.
                                                                              ing People 
The Autism Education Trust                             re a bout the Valu arers and 
                                          To learn mo              for family c
(AET) is holding its first
                                         strategy i mplications              rers, attend 
conference with Sarah                                     pp ort family ca                    
                                            those who su                        the Valuing
McCarthy-Fry, Parliamentary                             mina  r (funded by
                                           the FREE se                            arch 3rd.  
Under Secretary of State for                              ) in  London on M
                                             People Team              
                                                                                    e Family 
Schools and Learning delivering
                                                          rmatio   n, contact th
the keynote address.                        For more info                    0117 906 175
                                                            rt Service on
                                              Carer Suppo         
To book tickets contact
                                                  naomi.s   hannon@h
t 0115 9113367 f 0115 9113362
12                                                                                Spring 2009

                                                     New Leaflet available from
                                                     the Department of Health:
                                                     What are the Mental Capacity
Haringey Shed Theatre                                Act Deprivation of Liberty
                           n’s & Youth               Safeguards?
The fees for our Childre
                            d Thursday
Theatre’s on Tuesday an                              This provides a brief general
are £40 per term with a                              introduction to the MCA DOLS
                          s have set up a
rate of £20. Our trustee                             and has been specifically
                            ision of
special fund for the prov                            designed for care homes and
                           me cases free
financial help and in so                             hospitals to help staff
                            rs who need
 places for those membe                              understand what the MCA
                           plication form
 it. Please ask for an ap                            DOLS will mean for them and
                           this assistance.
 or call for a chat about                            for their service users.
                           nd and Community
  At present the Shed Ba                             Download from:
                             Haringey Shed are
  Chorus is foc. Places at                 
                            we receive your
  in great demand. When                              Publicationsandstatistics/
                             let you know if we
  application form we will                           Publications/PublicationsP
                           place in the theatre
  are able to offer you a                            olicyAndGuidance/DH_091868
                              will have to place
   group this term, or if we
                            ng list. For further
   your name on the waiti                            Alternatively try: http://
                            65 5454 or 07850
   information, call 020 83                
   617 169 or email info@
                                           Home School Autism Support
                                           Specialising in educational home
                                           programming and school integration
                                           for children with autism and related
happykidsholidays is a non-profit          special needs. Current services include
making association. We:                    consultation, supervision, direct support
                                           of students, their families and teachers
 link families with children with ASDs     in home, school and community settings.
 with property owners in France who
                                           Jocelyn Clinton, M.S. Ed.
 are committed to providing a
                                           m: 079563 27051 t: 020 8373 1709
 holiday in a safe, non-judgemental
 support families in preparing for        Free No Limits Sports Club at Clissold
 their holidays                           Leisure Centre for disabled and able
 provide support on holiday where         bodied residents training and competing
 necessary and possible                   together in sports like athletics, basketball,
We are also able to provide fully or      cricket, trampolining and Boccia.
partially supported holidays for adults      Under 16s from 5 to 6pm Mondays
with Asperger Syndrome and other             Over 16s from 6 to 7pm Mondays
related disabilities.                     No need to register - just turn up.
                                          Contact Alan Walsh on 07974 891932 or
        Supporters Application Form
        for Individuals, Parents and Carers
        and Organisations

Applicant’s Contact Details:                                                       Please complete in BLOCK CAPITALS

Title                                                   Surname


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Postcode                                                Borough

Tel No Day                                              Tel No Eve

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Signature                                               Date

Please complete this section only if you are RENEWING your subscription:

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Signature                                               Date

Costs:               (Please enclose a cheque/postal order made payable to mcch society ltd )

Individuals:       • £ 10.00 (waged)         • £4.00 (unwaged)                Organisations: • £ 15.00

If you’re a UK Taxpayer and wish autism london to reclaim the tax back for FREE, please sign the
declaration below:

  I would like autism london to treat all donations I have made for the six years prior to this
  year, (but no earlier than 6/4/2000) and all donations I make from the date of this declaration
  until I notify you otherwise, as Gift Aid donations.*

  Signed: _______________________________________ Date: ______________________
  *I understand that I must have paid an amount of Income Tax and/or Capital Gains Tax at least equal to the tax that
  autism london reclaims on my donations in the appropriate tax year (currently 28p for each £1 that I give).

  • You can cancel this Declaration at anytime by notifying autism london.
  • If you pay tax at the higher rate you can claim further tax relief in your Self Assessment tax return.
  • Please notify autism london if you change your name or address.

                          Please return this form, with your subscription, to:
         Fundraising Manager, mcch society ltd, FREEPOST NAT 8225, Maidstone, Kent ME16 0BR
                                              Registered Charity Number: 1009720                                   Feb09

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