AUTISM GM NEWSLETTER
www.autismgm.org.uk
SUMMER 2013 NAS Campaign Push for Action
Pages 2—3
Review of NAS Conference By Autism Advocate Quantumspirit
Page 4
NEW! Parent Support Groups
Page 5
Top Tips on moving from primary to secondary school
Page 6
Writing a Will
Page 7—8
Getting on? Growing older with autism NAS Policy Report
Page 9-10
Network Autism Where Autism Professionals connect
Page 10
Launch of Family Fund Report Tired All the Time
Page 11—12
Airport Awareness Guide
Page 13
New edition of the DSM released
Page 14
New NAS Information Sheets
Page 15
Mental Capacity Act
Page 15
Forthcoming Events in the Region
Page 16
Parent Support Groups in GM
Page 17
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elcome to this edition of AutismGM
As it is still Summer holidays Debbie Waters is taking leave so I am writing this editorial in her place. Some of you may be aware that later in the year Debbie will be going on Maternity Leave. This will leave a gap for the editorial role of AutismGM for the next 12 months. We are, therefore, trying to find some Guest Editors who may be interested in talking to us about one of the future editions of AutismGM. If you are interested in taking up this challenge please get in touch with us and we can have a chat. In particular, I’d be interested in finding a young person on the spectrum who might like to edit an edition specifically aimed at young people on the autism spectrum. This might involve book reviews, DVD’s and games that may be of interest to some people with autism. In this edition we have our first contribution from Quantumspirit who is a person on the spectrum who has kindly agreed to start doing some writing for us. We hope you’ll agree that his article is a useful and insightful review of the recent conference on autism and sexuality (see Page 4). As this is the holiday season you may be interested to know that Manchester Airport have updated their Airport Awareness Guide for families of children on the spectrum (see Page 13). The new NAS report Getting on? Growing older with autism is a useful reminder that not only are there children with autism and adults with autism but those adults become older adults. We still have a way to go to make services autism-friendly for older people and this report gives us some useful insight.
AUTISMGM Newsletter is produced by The National Autistic Society Family Services Development Project Anglo House, Chapel Road Northenden, Manchester M22 4JN Tel: 0161 998 4667 Email: mari.saeki@nas.org.uk or Email: Debbie.waters@nas.org.uk Editor: Debbie Waters Editorial Assistant: Barbara Whillans
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Mari Saeki Editor
PUSH FOR ACTION NAS CAMPAIGN LAUNCH
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n May 14th the NAS launched its new campaign Push for Action with the key aim to push for better support for adults
This year, the Government is reviewing what progress has been made so far, which is a vital opportunity to make the case for more support. Care Minister Norman Lamb highlighted the importance of the review:
‘Our forthcoming review of the Autism Act will give us the perfect opportunity to ensure that, locally and nationally, the government is continuing to improve standards for adults with autism.’ Local Progress In Greater Manchester. with autism. For far too long, adults with autism and their families have been living without the everyday support they need. Some need help to get washed and dressed, others need specialist support to find sustainable employment, and others just want to take part in their local community. Push for Action aims to end their wait. More than 50 MPs attended the NAS launch event in Parliament, and pledged to help make sure the Government and local councils do more to support adults with autism and their families. In 2009 Parliament passed the Autism Act, which meant that for the first time, autism was on the agenda. However, four years on, NAS research shows 70% of adults with the disability are still not receiving the help they need as the following unsettling statistics show: ♦
36% of people with autism said they need help to wash and dress. But only 7% get this support from social services.
♦
77% of people with autism say they need help to manage money. But only 4% get this support from social services.
♦
53% of people with autism say they want help to find work. But only 10% get the support to do so.
We are beginning to see some progress. For instance, all our local councils have a person responsible for making sure they are following their new legal duties. Also, all are making progress on establishing a diagnostic pathway - a route for adults with autism to get a formal diagnosis. To see how well your own local authority is progressing, follow the link to the NAS website below and enter your postcode. The link also enables you to show your personal support for the Push For Action campaign by signing the NAS petition.
www.autism.org.uk/get-involved/ autism-strategy.aspx
John Davies Volunteer
(Continued on page 3)
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brand new health body called a Health and Wellbeing board is being set up in your area. It will have a crucial role in deciding what areas of health and social care should be prioritised, and checking if your council and the NHS are being transparent about the support they’re providing adults with autism. To effectively do their job, they need to understand autism and the current challenges in your area. Otherwise, their role in helping adults with autism will be wasted. You can help by sending them a message using the online form at www.autism.org.uk/push That way you can put autism at the top of their agenda from the start.
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AUTISM & RELATIONSHIPS, PUBERTY, SEX AND SEXUALITY CONFERENCE A personal perspective from an Autism Advocate
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s an autism advocate, I recently attended the NAS conference on Autism, Puberty, Sex and Sexuality hosted at the Marriott Renaissance Hotel, Manchester on Tuesday 11th June 2013. The conference programme was divided into three plenary sessions in the morning and optional streams plus a final plenary session in the afternoon. The speakers of each session came from a range of backgrounds including three people who were reported as being on the autistic spectrum themselves. Here is an account of my experience of this event. It began with Dr Wendy Lawson delivering the keynote presentation: Autism Spectrum Conditions, relationships, sexuality and communication. She has two sons who are on the Dr Wendy Lawson autistic spectrum, as well as herself. Living in Australia, she is a professional counsellor, and is the author of numerous books on autism such as Sex, Sexuality, and the Autistic Spectrum. The definition of sexuality is considered; whether it is different for people with autism, and does sexuality vary on a similar spectrum (she stated that certain fish can change gender). Wendy eloquently expresses the complexity of her own issues through composition of poetry. She also presented some interesting brain scan evidence that shown how different areas of neurotypical brains are more holistically connected together, where as autistic individuals tend to have greater concentration of connectivity in fewer areas. It is for this reason she asserts that neurotypicals are better at shifting attention and demonstrate a wider range of interests, as opposed to autistics who have narrower interests with greater preoccupation. This may explain why neurotypicals, can ‘connect’ with a wider range of people, and more proficient at socialising as a result.
Also on the autistic spectrum, was Anya Ustaszewski, autism awareness trainer, campaigner, and composer/musician to talk about: My body keeps Anya Ustaszewski changing – a personal perspective on autism and puberty. It has long been understood that autistic people find change difficult to cope with. Anya definitely found this to be the case when puberty occurred as if ‘no one had asked her permission’. She initially felt dirty as though she was ‘sexualised against my will’. Anya challenges the assumption that autistic people lack ‘empathy’. Her problems were better described by alexithymia - the difficulty of expressing emotions. Stress occurred due to overstimulation, sensory issues with sanitary towels/tampons (smell, feel, appearance) and sex (touch), and the desperate need for acceptance when forming relationships. But she also points out the ‘positives’ of relationships where you do find acceptance, and her previous partner thought that autism was “cool”. The conference ended with a light and humorous touch, as Dean Beadle, journalist and autism speaker, delivered the final plenary session: Asperger’s, sexuality and me. He has written for numerous publications including Cerebra Bulletin and Dean Beadle NAS communication Magazine. Dean aptly disclosed his own experience of forming and maintaining sexual relationships from a perspective of being both gay and autistic. Just as everybody has urges that compel us to act in a socially inappropriate manner, he stated that his urges are harder to control given his condition. He finished by asserting that everyone has, both the right and potential, to and for a relationship and it is ‘not just for neurotypicals’. Quantumspirit Page 4
NEW PARENT SUPPORT GROUPS IN GREATER MANCHESTER
High-Functioning Trafford
Manchester Caters Centre Vulcan Mill 12-18 Pollard Street Manchester M4 7AN Tel: 0161 27 27 27 0 Contact: Hannah Moody, Centre Co-ordinator Email: admin@manchestercarers.org.uk Website: www.manchestercarers.org.uk A Carers Group has been set up recently with a focus on parents of children and adults on the autistic spectrum. The group meets weekly (term-time only) on Thursdays between 12.30-2pm. Manchester Carers Centre operates an extremely popular fund for parent carers of children under 18 years of age in Manchester. Applicants can apply for grants of up to £400 to spend on taking a break from their caring responsibilities. For more information about the fund, how to apply and guidelines, please contact our Carersline on 0161 27 27 27 0 Mari Saeki, Project Officer for the NAS Family Services Development Project has been invited to speak to parents at the September meeting on Thursday 12th September 2013 between 12.30—2pm. There is on-street car parking spaces on Pollard Street and a Tram Stop (New Islington) nearby.
Tel: 07757 592474 Contact: Jayne Dillon Email: hftrafford@outlook.com Facebook www.facebook.com/hftrafford Twitter HFTrafford@traffordasd This group has recently set up to provide support to parents, carers, children and young people affected by Asperger’s syndrome and High-Functioning Autism. They plan to meet on the last Sunday of every month (excluding December) at the ASGMA Resource Centre (time to be confirmed). The group is having a Launch Event on 22nd September 12-3pm at the ASGMA Resource Centre, 1114 Chester Road, Stretford and you would be very welcome.
Talbot House Centre Alpha House Rowlandsway Wythenshawe Manchester M22 5RG Tel - 0161 498 0312 Contact: Emma Gerrard info@talbothouse.org.uk www.talbothouse.org.uk Open Mon-Fri 10am—3pm
Talbot House has supported parent carers of children and adults with learning disabilities who live in the Manchester area for over 35 years. They offer a warm welcome and a one Breaking Barriers offers a stop shop for parent carers including form signposting service to filling, advocacy and advice, emotional parents and carers of support, lunches, breaks and crafts to name children and young people just a few. If there is sufficient demand for a aged 0-25yrs with social and separate group for parents/carers of children communication requirements. and adults on the autistic spectrum they would consider setting one up as the POSY Group Contact: Steph Sherratt (Parents of Special Youngsters) based in Tel: 01204 23 23 23 Wythenshawe has had to close due to health Email: breakbarriers3@gmail.com problems of its founder, Leslye Vaughan. Page 5
TOP TIPS ON MOVING FROM PRIMARY TO SECONDARY EDUCATION
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e came across this article on the website of the Foundation for people with learning disabilities and thought it was a useful resource for those parents whose son or daughter may be moving onto Secondary education this autumn. “The move from primary to secondary education can be stressful for any young person, but those with learning disabilities or other special educational needs (SEN) are under even greater stress.
We used their experiences and their ideas to develop the following three guides: TOP TIPS for pupils moving on to secondary school This is an easy-read guide that includes a checklist and poster, to give young people simple ideas of how to prepare for the move to make it less stressful. USEFUL INFORMATION FOR PARENTS who have a son or daughter with special educational needs (SEN) moving from primary to secondary School.
This is because primary schools offer more predictability, usually with the same teacher and classroom throughout the year. The move to secondary school brings a lot of changes different classrooms and different teachers for each subject, larger buildings spread over a campus, new travel arrangements and coping with support from unfamiliar teaching assistants.
Some practical ideas for families, to help support their child to feel more prepared and able to cope with the move to secondary school. This resource complements the Top Tips for pupils.
If the transition between primary school and secondary school is not well-managed, children with learning disabilities or SEN can end up feeling isolated and vulnerable. Their emotional health suffers and so does their academic performance. A well-planned transition between primary and secondary phases will help remove any barriers to learning and enable them to reach their full academic potential as well as feeling less isolated.
This guide is aimed at teachers and is divided into good practice suggestions for primary and secondary school staff. Some of the ideas are very practical and can be achieved quickly, others may take a little more planning, and there are other suggestions to consider that will require strategic or systemic change.
The project team, a partnership between the Foundation, University of Northampton and University of Cambridge, met with pupils, school staff and parents in three Peterborough schools, to find out about their experiences of this transition. We wanted to produce some resources to support schools to plan successful transitions. We spoke with around
MOVING ON - good practice in facilitating primary to secondary transitions for pupils with s p ec i a l e d u c a t i o na l needs (SEN)
We also produced two posters, one for pupils and one for teachers, to help you stay on track and plan the best possible transition from primary to secondary education�. The project was funded by the Bernard Sunley Charitable Foundation and the Constance Travis Charitable Trust. To download any of the above resources please visit:-
20 pupils with SEN who had recently moved from primary to secondary school to find out what worked and what didn't work well when they moved school. Page 6
www.learningdisabilities.org.uk/ our-work/employmenteducation/moving-on-tosecondary-school/
WRITING A WILL Written by Christine Thornley of Gorvins Solicitors
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or parents of children with learning disabilities, making a Will provides them with the opportunity to protect their children on their death. Christine Thornley, Wills, Trust and Probate partner at Gorvins Solicitors, explains why it is important to write a Will, the protection it can offer and how using trusts in your Will can protect vulnerable beneficiaries. “Making a Will is not just about deciding who gets what. There are also wider issues to consider, particularly for parents and families of vulnerable children. A Will provides an opportunity to ensure your child receives the appropriate financial support after you’ve gone.” In your Will you can: ♦ ♦ ♦
♦ ♦
Appoint guardians for your infant children Ensure that your children and family are provided for Ensure your assets are left in such a way that they can be managed for anyone who might find it difficult to manage their own affairs Ensure your assets are left in such a way that any means tested benefits or funding won’t stop Ensure that your children and family can maintain and enhance their quality of life
Christine continues: “If you don’t have a Will the Rules of Intestacy apply. This means the law dictates who will take your estate on your death and how. Quite often the people you want to benefit will not automatically do so. Even if you have a Will, unless it has been prepared with your particular circumstances in mind it can cause problems as any inheritance could have a huge impact on the level of means tested state benefits your child or relative receives.
“In addition, many vulnerable people are unable to manage their own finances, particularly if they inherit a large lump sum, which leaves them open to being taken advantage of, spending or giving away their inheritance rather than using it for their future.” A correctly drafted Will can ensure that your child or relative can benefit from your estate but be protected from owning the money and assets outright. This can be done by placing the assets into a Trust. Christine added: “Using a Trust in your Will is the best way of protecting your assets. There are two people involved in this process – the Beneficiaries and the Trustees. You select your Beneficiaries, which will usually include your vulnerable child, other children and grandchildren, family members and charities. You also choose the Trustees who are responsible for making the decisions about who benefits and when. You will provide your Trustees with guidance about how you want them to use the funds in the trust. The Trustees can only make unanimous decisions, which offers an extra level of protection. Trustees usually use the Trust fund to provide for things the state doesn’t and ensure that your child is looked after in accordance with your wishes. Leaving your assets on Trust means that your child will retain any means tested state benefits, which is extremely important.” said Christine. “Once your child turns 18yrs they are legally an adult and considered able to deal with their affairs. An adult is presumed to have the required level of mental capacity to make a decision, until it is shown that they lack capacity. A medical professional will often assess a person’s capacity. (Continued on page 8)
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WRITING A WILL continued
(Continued from page 7)
If a person is deemed capable of managing their own affairs then they can prepare Lasting Powers of Attorney to appoint people to manage their property and other affairs when they need help and make important decisions about their health and welfare when they are no longer able to do it themselves.
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arents, carers and family members of people with autism often ask The National Autistic Society for advice on providing for their loved ones in the future. Our free guide to wills and trusts will give you some useful information.
If they don’t have capacity, someone can apply to the Court of Protection to be appointed as their Deputy, this will enable that person (which could be you) to manage your child’s property and financial affairs”.
The new 36-page guide looks at making or updating a will, and setting up a trust for a person with autism. It also talks about some of the things to take into consideration when planning for the future.
Christine added: “There are legal processes in place to help you ensure the right level of care and support is provided to your child after you’re gone.
•
Request your free copy of our guide to wills and trusts by either ringing Siobhan on Tel: 020 7903 3559 Or by emailing siobhan@nas.org.uk. Please include your full name, address and postcode.
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Download a PDF version of the guide from the NAS website
My advice is to speak to a legal specialist in this field and take the right steps to plan for your child’s future.”
www.autism.org.uk/get-involved/ leave-a-gift-in-your-will/guide-towills-and-trusts.aspx
Christine Thornley Gorvins solicitors
P.S. Christine often gives talks to groups so if any readers would like Christine to deliver a talk to their particular support group do contact her. There is no charge for this service.
C
erebra offer a popular Wills and Trusts
Voucher scheme to help parents prepare for their child's long-term future. A voucher is worth £350 towards the cost of having a solicitor prepare a will and discretionary trust to make provision for your child’s future. For further information call
0800 328 1159 or visit the website at
Tel: 0161 930 5221 www.cerebra.org.uk
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GETTING ON? Growing older with autism A NAS policy report
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hat are some of the challenges people with autism face in older age and what can government do to address them? These are the questions that The NAS’s new reports and campaign, Getting on? Growing older with autism, seek to answer. Based on interviews, focus groups, surveys and the outcome of evidence sessions held in parliament earlier this year, the Getting on? reports set out some of the key issues facing older people with autism and what government and other bodies need to do to make sure they have the services and support they need.
SUMMARY OF RECOMMENDATIONS
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Amend the Care Bill to include:
i.
A general right to independent advocacy. People with autism must be included as one of the groups to whom this right applies A requirement that local authorities follow NICE guidelines in exercising their ‘duty of prevention’. A requirement, in secondary legislation, that people whose needs would be assessed at equivalent to ‘moderate’ under current Fair Access to Services (FACS) criteria, must be eligible for services.
ii. iii.
In its review of the autism strategy, the Department of Health should:
The Department of Health, local authorities, local NHS and other bodies should take forward the NAS Push for Action recommendations.
• • •
The Department of Health should: • •
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• •
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Issue guidance on how government policy on older people applies to people with autism Fund a small-scale research project to investigate ways to overcome the challenges posed by diagnosing adults in older age Clarify how the NICE guidelines should be applied to older people in any information it develops for local NHS bodies on diagnosing autism in adults Make research funding available for ageing and autism Work with the British Geriatric Society and the Old Age Psychiatry Faculty of the Royal Society of Psychiatrists to incentivise autism training through continuing professional development Issue examples of best practice for local authorities on planning the transition into older age for people with autism who are in receipt of services
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Consult with older people with autism Highlight how the NICE guidelines should apply to older people Highlight that strategy implementation must benefit older people and that training healthcare professionals and older people’s services are key to it doing so Remind local authorities of their duty to collect data on the number of people over 65 with autism and recommend that these figures are included in Joint Strategic Needs Assessments (JSNAs).
Local authorities and Clinical Commissioning Groups (CCGs) should: •
• •
•
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Train staff working in older people’s services in autism, and include training in autism as a contractual requirement for older people’s service providers Follow the NICE guideline on autism in adults Consider volunteer-led models to support older people with autism in developing local commissioning plans, and fund such services to meet need Gather information on the numbers of (Continued on page 10)
GETTING ON? Growing older with autism A NAS policy report/ continued (Continued from page 9)
people over 65 with autism in the local areas, as recommended by the autism act statutory guidance, and include these figures in JSNAs •
The Care should: •
Ensure they are developing postdiagnostic support, including counselling from counsellors trained in autism.
Consider amending the Direct Enhanced Services (DES) scheme which rewards GP practices for offering annual health checks for people with learning disabilities, to include people over 50 with autism across the spectrum.
Where Autism Professionals Connect
N
etwork Autism offers a wealth of information and a variety of ways for people to engage with content. These
include:
Commission
(CQC)
Provide basic autism training to all its You can download a copy of the full policy report, which includes detailed findings and recommendations to government or download the shorter report for campaigners on the NAS website www.autism.org.uk
The NHS Commissioning Board should: •
Quality
The NAS is now working, alongside a small group of campaigners, to raise awareness of the report’s recommendations and to get them implemented. Find out if there are ways you can get involved in the Getting on? campaign by emailing campaign@nas.org.uk
♦
collaborating in open discussions
♦
keeping up to date with the latest autism news
♦
reading exclusive articles from autism specialists
Join the growing Network Autism community for FREE at
♦
reading the latest autism research and good practice
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joining or setting up specialist interest groups Page 10
www.networkautism.org.uk
LAUNCH OF FAMILY FUND REPORT ‘TIRED ALL THE TIME’
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amily Fund launch the report, ‘Tired all the Time’ today at the Senedd, Cardiff Bay as part of our 40th year activities in raising awareness of our work and the barriers that families continue to face. The report reveals the impact of sleep difficulties on households, capturing first hand experiences of over 2,000 parent and carers raising disabled children across the UK in their own words. Key findings show: ♦ ♦ ♦ ♦ ♦ ♦
Over 93% are up in the night with their children 49% have health issues due to the lack of sleep 22% have had relationship problems as a result 11% experience tiredness at work 15% are concerned about siblings and the wider family’s health Almost 1/3rd had not sought professional support.
these issues daily surviving on little sleep and lots of coffee.” Parents, carers and the wider family members, including siblings are experiencing significant financial, social and emotional challenges as a direct result of not having enough sleep.
Families from across England, Northern Ireland, Scotland and Wales shared with the Family Fund how widespread the issue of sleep deprivation is. Through working with families for 40 years, we know that sleep continues to be a key issue, this report is in response to the demand to raise the issue on families’ behalf, giving them a voice. The report intends to draw attention to this key health issue that can affect the whole family’s health and well-being with long-term consequences such as limiting opportunities in education and employment.
One parent, Andrea from Merthyr Tydfil spoke to Family Fund about her experience:
“I said goodbye to sleep when my son Jayden was born at 24 weeks. Stress and upset of Jayden’s diagnosis, constantly being told by professionals he’s significantly behind, worrying about his schooling, fighting to get help from social services and the constant lack of sleep has led to severe anxiety, no sleep at all and medication. The sad thing is we’re not the only family who go through
Families’ responses identified three key needs to be shared with policy and decision makers across the UK and other charitable organisations. ♦ ♦ ♦
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To be listened to, believed and heard when they talk about sleep difficulties Their concerns are acted upon at an early stage Timely and regular support, not just one consultation, as sleep deprivation is often not a short term problem.
(Continued on page 12)
LAUNCH OF FAMILY FUND REPORT ‘TIRED ALL THE TIME’ (Continued from page 11)
ADDITIONAL RESOURCES Cheryl Ward, Chief Executive at the Family Fund said:
"This report shows the daily mental, physical and emotional challenges that families with disabled or seriously ill children or young people face when sleep eludes them night after night. For many families, sleepless nights continue on relentlessly, year after year, sometimes well into adulthood with often varying levels of support or advice available. At the Family Fund we will, as we have for 40 years, continue to provide grants to support families across many areas of their lives including helping them to sleep better. There is far more to be done, the intense desire from parents for wider recognition of the impact of sleep deprivation cannot be ignored and we are keen to work with other organisations providing support across the UK. We want to help bridge that gap and give families a better night’s sleep.” To gain a copy of the research report in full or to discuss partnership working, email Family Fund: comms@familyfund.org.uk This article was produced with permission of The Family Fund.
the
kind
The NAS Info Sheet on Sleep and autism: helping your child Available from the NAS website www.autism.org.uk Inscape Centre Sleep Clinic Tel: 0161 283 4750 Contact: Christine Hoyle, Co-ordinator Cerebra has a team of sleep practitioners covering parts of the UK who can offer help and advice on sleep issues, some of which include settling problems, difficulty sleeping alone and early rising. If it is possible, a sleep practitioner will come out and visit you, or you will be invited to attend a local sleep clinic. If this is not possible, support will be given over the phone or sometimes via email or by post, if this is your preferred method of contact. You can complete a contact form on-line which will help the sleep assistant to determine the cause/reason for the sleep problems your child is experiencing. They will then send out a sleep pack for you to fill in which includes a sleep questionnaire and diary. If you just have a question/query, then you can contact the sleep assistant and the team will endeavour to respond to your enquiry as soon as they can.
Tel: 01267 244210 or sleep@cerebra.org.uk Page 12
AIRPORT AWARENESS GUIDE
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anchester Airport have recently produced updated versions of their Airport Awareness booklets for families who have children on the autistic spectrum and are planning to fly abroad. There is a separate booklet for each of the 3 Airport Terminals.
Contact the Customer Contact Centre to request the special wristbands. Their Tel No is 080714 777 747. Ask for Ryan or Amanda. Please allow 1 weeks notice prior to your travel date to enable the wristbands to be posted out to you. The Airport Awareness booklets are available to download FREE of charge from their website. www.manchesterairport.co.uk/ manweb.nsf/content/ airportawarenes
T
he National Autistic Society, in partnership with insurance service Unique, offers a specialist travel insurance policy for:-
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People affected by autism and other preexisting medical conditions, disabilities and allergies
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Families and friends travelling with them
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Supporters of The National Autistic Society (NAS members receive a 10% discount)
For further information on the policies available please visit the NAS website at:www.autism.org.uk/living-withautism/out-and-about/holidaysand-days-out/autism-specificcomprehensive-travelinsurance.aspx
Manchester Airport has also produced an online ‘walkthru guide’ for each Terminal as well as filming a video which will be available towards the end of summer 2013. Special wristbands for children on the autistic spectrum are available on request in advance of the flight. Staff will then be alerted to give the family special consideration when progressing through the Check In desk and security.
Or simply give Unique a call on 01603 828 201 (say you read this on the NAS website). Alternatively, email Unique your contact details and a preferred time to call at unique@ajg.com and they will call you back. Unique won a Charity Times insurance award in 2011. Page 13
NEW EDITION OF THE DSM RELEASED
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he American Psychiatric Association has revised its diagnostic manual, known as the Diagnostic and Statistical Manual (DSM). The DSM outlines the criteria used to diagnose autism and Asperger’s syndrome, and is one of the two main international sets of diagnostic criteria for autism. The fifth edition (DSM-5) was published on 18 May.
concerns around the removal of Asperger syndrome as a distinct category from the manual are therefore understandable. However, all individuals who currently have a diagnosis on the autism spectrum, including those with Asperger syndrome, will retain their diagnosis. No one will ‘lose’ their diagnosis because of the changes in DSM-5. On the 18th May The National Autistic Society held a live chat session with Professor Gillian Baird OBE about these changes. A replay of this session can still be viewed on the NAS website.
The DSM-5 includes some changes which could affect the way diagnoses will be given to people on the autism spectrum. But although DSM is influential, the main set of criteria used in the UK is the World Health Organisation’s International Classification of Diseases (ICD). We do not expect there to be any immediate changes to the way that autism and Asperger syndrome are diagnosed in this country as a result of these changes. Amongst the changes to the manual is the addition of sensory behaviours to the existing set of diagnostic criteria. New ‘dimensional elements’ give an indication of how much someone’s condition affects them, which will help identify how much support an individual needs. The emphasis during diagnosis will change from giving a name to a condition to identifying all the needs that someone has and how these affect their life. As well as these changes, a number of different terms which have been used in the manual until now have been replaced by the collective term ‘autism spectrum disorder’. Many people consider the term ‘Asperger syndrome’ to be part of their identity, and
Professor Gillian Baird OBE
There has been much discussion about DSM5 and the revisions related to autism in the manual. Professor Baird was involved in the development of DSM-5, as a member of the neurodevelopmental disorders work group, and is ideally placed to discuss the revisions. Professor Baird is a paediatrician, a leading expert in autism and chairman of the British Academy of Childhood Disability. She has led the neuro-disability clinical service at the Newcomen Centre for Developmental Medicine at Guy’s Hospital, London, for a number of years. Professor Baird is also Vice President of The National Autistic Society.
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NEW AND UPDATED INFORMATION SHEETS The following Information Sheets have been updated from the Autism Helpline:Advocacy and Autism@ Autism Helpline Behaviour guidelines @ Benefits for adults with autism@ Benefits for children with autism and their families Benefits for young people with autism (aged 16-20yrs) Dentist: preparing for a visit @ Diagnosis: the process for adults @ Disability discrimination in education (England and Wales) @ Disability Living Allowance for children aged under 16 (formerly known as Disability Living Allowance (DLA): what is it?) @ Disability Living Allowance for Children: tips for making a claim (formerly known as Disability Living Allowance (DLA): tips for parents and carers) @ Employment and Support Allowance @ Holidays: autism-friendly venues @ Holidays@ preparation and practicalities@ Home improvements and equipment: funding @ Income support (formerly known as Income support: a guide) @ Information sheets and leaflets available from the Autism Helpline * Permanent exclusion (England) @ Personal Independence Payment @ Reassessment of incapacity benefits @ Social security benefits for older people @ Statistics: how many people have autism spectrum disorders? @ Visual supports @ Those Information Sheets marked with @ are available on the NAS website at http://www.autism.org.uk/infosheets
THE MENTAL CAPACITY ACT & AUTISM
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any people with autism, their families and supporters, are unclear about how the Mental Capacity Act works. The NAS held a live chat on Thursday 25 July about this topic and you might find the transcript of interest. The Mental Capacity Act 2005 is designed to protect people who can't make decisions for themselves or lack the mental capacity to do so.
Alex Rook, a Partner in the Public Law Department at Irwin Mitchell Solicitors, answered the questions of people wanting to know more about the Act during the live web chat. Alex specialises in community care, mental capacity, disability discrimination and human rights law at Irwin Mitchell Solicitors. He has brought judicial review cases to secure proper assessments and services for vulnerable children and adults. Alex is regularly instructed by the Official Solicitor, as well as families and advocates, to act on behalf of vulnerable adults who lack capacity to make decisions regarding their health and welfare in proceedings in the Court of Protection.
If an adult with autism has severe learning disabilities, or they lose the ability to make specific decisions because of an illness or medication, they may need to have decisions made on their behalf. The Mental Capacity Act, which applies in England and Wales, states that all decisions must be made in the best interest Page 15 of that person.
Replay the chat to learn more at www.autism.org.uk
FORTHCOMING EVENTS IN THE REGION
DISABILITY LIVING ALLOWANCE WORKSHOP ( MANCHESTER PARENTS/CARERS ONLY) KIDZ UP NORTH
Friday 13th September 2013 10am—12.30pm Specialist Resource Team Westwood Street Moss Side, Manchester M14 4PH The aim of the course is to raise awareness about how to apply for DLA for children and young people and look at the skills and ways to complete the form. To book your place please contact Rachel on Tel: 0161 234 5187 or Catherine on Tel: 0161 245 7180
Thursday 21st November 2013 9.30am—4.30pm Event City (next to the Trafford Centre) Phoenix Way, Off Barton Dock Road, Urmston, Manchester M41 7TB Kidz up North is a one-stop shop offering the most up-to-date advice and information on equipment, products and services and much more. There will be 130 exhibitors. A full programme of Free CPD seminars for professionals and parents will be running alongside the exhibition. There will be the opportunity to update your knowledge and understanding on particular topics such as moving and handling, transition, sleep issues, toileting issues and much more. A full timetable will appear on Disabled Living’s website and within the visitors free entry ticket as plans progress. To order your visitor’s free entry tickets contact: Disabled Living Tel: 0161 607 8200 Email: info@disabledliving.co.uk www.kidzupnorth.co.uk
WOMEN AND GIRLS ON THE AUTISM SPECTRUM Tuesday 1st October 2013 Hilton City Centre Hotel, Leeds This conference will examine the unique challenges facing women and girls with autism. The programme of international experts will discuss the implications for future research and practice, including prevalence rates, adaptation of diagnostic criteria and differences in presentation.
The 10th Annual National Conference organised by Professionals & Parents in Partnership
Keynote speaker is Jennifer O’Toole, founder of Asperkids and author of two international successful books. She and her daughter both have Asperger syndrome and will be sharing some unique insights into what might be going on emotionally and intellectually when girls with autism exhibit certain types of behaviours. To book your place visit www.autism.org.uk/conferences/women Or Tel: Janet Matthews, Conference Coordinator, 0115 911 3367
Tuesday 26th November 2013 Registration 8.30 Event Closes 16.30 Stepping Hill Hospital There will be both parent and professional speakers and workshops. Workshops covering the following areas: How will the new guidelines affect services my child should be able to access?; Toddler ADOS / Family wellbeing; Commissioning adult services/ How to set up adult services; Sex and sexuality /Girls and ASD. When booking cheques should be made payable to Autism - A Hands on Approach. Fee: Parents: £35 Professionals: £100 Further details: Tanya Farley Tel: 07966 399709
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ASD PARENT SUPPORT GROUPS BOLTON
OLDHAM/continued
STOCKPORT/continued
Hyperactivity And Euro Developmental Family Unity Link (H.a.n.d.f.u.l.) Tel: 01204 794979 Contact: Michelle Daubney Email: handfulhelp@yahoo.co.uk
A.S.C. (Autistic Spectrum Condition support group) Contact: Natalie Hughes (Treasurer) Tel: 07825899658 Email: paash@live.co.uk
BURY
ROCHDALE
Stockport Carers for Adults on the Autistic Spectrum Meets on the 3rd Tuesday of every month 7.30-9pm at The Newbridge Centre Contact: Rayonette Jude Tel: 0161 439 0627 Email: stockportCAAS@gmail.com
Bury Autism/Asperger syndrome Support Group Contact: Chris Parkinson Tel: 0161 763 4867 Email: burycarers@yahoo.co.uk
Littleborough Autism, Aspergers syndrome and ADHD Support Triangle (L.A.A.A.S.T.) Tel: 07980 983872 Contact: Liesl Beckles (Telephone support only)
Hurdles Family Support Group Contact: Geraldine Greene Tel: 0161 797 0082 Email: buryhurdles@gmail.com Website: www.hurdles.org.uk
Rochdale Circles Support Group Tel: 07901 854741 (will be answered by a member of the Rochdale Parent Forum Email: parentforum@hotmail.com
Bury Autism Parent Society Contacts: Joanne and Tony Moran Tel: 761 0132 Email: mail@baps-online.org (Telephone support only)
MANCHESTER The Autumn Group Contact: Sue Broaderst Tel: 07581 103 771 Email: autumngroup@live.co.uk Grange Parents Group Contact: Anne-Marie O’Reilly Tel: 0161 947 9270 Email: annmarieoreilly63@yahoo.com
SALFORD Salford Action for Autism (SAFA) Tel: 0796 3024759 Carol Gray or Barbara Berry Website: www..salford-action-forautism.com Autism and Friends Contact: Sandra Moore Tel: 07544649696
OSCA Tel: 07913672175 Contact: Cathy Williams, or Maria Aspin Email: osca@bigfoot.com Website: www.fdk.org.uk/osca.html
TASCA (Tameside Action for social communication & Autism support group) Tel: 07754873480 (Mon-Fri 9.3.30pm only) Contact: Valerie and Neil Bayley Email: tasca4u@ntlworld.com Website: www.tasca.org.uk Tameside Asperger’s syndrome Support Group Tel: 716 3600 Contact: Julie Scrymgeour@nhs.net Autism Support for Parents & Carers Contact: Dan Redfearn or Holly Turton Tel: 0161 342 5197 or 5194 Email: d.redfearn@nhs.net Email: hollyturton@nhs.net
TRAFFORD
Sensory Stay and Play Tel: 0161 778 0051 Email: belvedere.childrenscentre@salford.gov.uk
ADHD/ASD Family Support Group Tel: 07969 459523 (Jess)
WIGAN
STOCKPORT
OLDHAM
TAMESIDE
Stockport ASD Partnership Project Support Group Offering monthly sessions with invited speakers. Tel: 249 4474 Contact: Cheryl Salt cheryl.knupfer@stockport.gov.uk
Love Autism Support Group Contact: Emma Harvie Tel: 07730 582487 Email:
OTHER SUPPORT GROUPS IN GREATER MANCHESTER The Autistic Society Greater Manchester Area (ASGMA)
Cygnet Springside ASD Support Group
A group for parents of children and adults with Asperger’s syndrome.
Organises events for parents, carers and individuals affected by ASC. Professionals are also welcome.
For further information regarding dates and times please contact the ASGMA Information Officer
Contact: Peter Lawson Tel: 0161 443 4060 Email: peterlawson@cygnethealth.co.uk.
Tel: 0161 866 8483 Email: information@asgma.org.uk Page 17