Your Autism Magazine Issue Summer 2015 by The National Autistic Society

WINNER OF THE 2014 MEMCOM AWARD FOR BEST CHARITY MAGAZINE

Autism YO U R

HOW WILL THE CARE ACT AFFECT ME? Our expert on the key changes

“I learn because I’m alive” Exploring new ideas and skills in adulthood

www.autism.org.uk

MAGA ZINE VOL 49 - NO 2 • SUMMER 2015

AUTISMFRIENDLY SPACES

How good design can change lives

Sara and David’s

extraordinary

with autism family Living and cerebral palsy

Summer 2015 EDITOR Eleanor Wheeler WRITERS Flynn Hagerty and Alice Todman

NAS HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk A DV E RT I S I N G Ten Alps Publishing One New Oxford Street London WC1A 1NU Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@tenalps.com www.tenalps.com

SUBSCRIPTIONS Only available to NAS members C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 supportercare@nas.org.uk

DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Eclipse Colour Tel: 01536 483401 F RO N T C OV E R © Adam Scott www.adamscott.co.uk The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine 2015 Summer Vol 49, No 2 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of the NAS. In the interest of providing the widest possible range of information to readers, we may include details of some of the many approaches to autism now available. However, this does not imply NAS endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that the NAS endorses or supports the groups or individuals running the website, nor does the absence of a website imply that the NAS does not endorse or support the group or individual running the website.

elcome to the summer issue of Your Autism Magazine. Our focus this issue is education. I hope you enjoy reading the advice and real experiences in our education supplement as well as the feature on adult learning in this magazine (page 28). In important news, the Care Act 2014 came into force last month. You can read a breakdown of the changes and find out how you may be affected on page 37. Also in this issue, we hear Sara and David’s truly inspiring story of raising a family with two serious disabilities and rising stars Lauren Lovejoy (page 25) and Isaac Raymond (page 46) talk about what it means to follow their dreams. I hope you have a lovely summer!

Eleanor Wheeler EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

Contents 04 News 10 Research in focus 12 Readers to the rescue 14 How do I... balance the care of all my children? 16 Feature: My story 21 Feature: Designs for living 25 Interview: Lauren Lovejoy 28 Feature: Lifelong learning 33 Advice: Housing options for adults 37 Advice: how does the Care Act affect me? 41 Spotlight on support: Transition Support Services 44 Resources 46 I’m... a fashion designer!

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14 YOUR AUTISM MAGAZINE

News

A round-up of the stories that affect you THE IMPORTANCE OF LANGUAGE

Autism Act: new statutory guidance published

Our Push for Action campaigners helped secure the new guidance

The Government has issued new guidance to update councils and local NHS services on how to implement the adult autism strategy for England. The strategy, a requirement of the Autism Act 2009, was refreshed last year in Think Autism following our Push for Action campaign. Thousands of people showed their support for a stronger strategy, but more detail on how councils and the local NHS could make its recommendations a reality was still needed. The new guidance is supposed to provide this detail by making the advice around training, diagnosis and care and support clearer. There is also new

SUMMER 2015

guidance on issues such as keeping adults with autism safe, employment and criminal justice. Councils and local NHS organisations have to follow this guidance unless they can show a good reason not to. If they are not following it, they can be legally challenged. They also have to report back regularly to central Government on their progress. NAS Policy and Parliamentary Officer Tim Nicholls said, “Local progress on the Autism Act has been patchy. It’s vital that all areas improve their support.” Make sure the autism lead at your local council is aware of the new guidance by going to www.autism.org.uk/autismstrategy.

In the last issue of Your Autism Magazine, an early draft of an article was printed by mistake resulting in some agreed editorial changes not appearing. Kabie Brook, an Autistic activist, explains why the language that should have appeared was important to her: “Accepting the language people use to describe themselves demonstrates respect. I refer to myself as an Autistic person because autism is an integral part of me. If others try to change or deny that it becomes impossible to express my true self. If someone calls me a “person with autism” despite knowing I reject this term, they are assuming their view of my identity has more validity than mine. The justification that “you are a person first” implies that being Autistic makes me less human, that they need to set aside an intrinsic part of me to allow themselves to see me as a whole person. I am left wondering why choosing to acknowledge ‘Autistic’ as part of my humanity is so difficult?” We agree that everyone has a right to be described in the way that they choose and we are very sorry for this mistake.

Read the corrected article at bit.ly/RightToSpeakUp.

SUMMER 2015 • NEWS

News in brief Police progress in autism awareness

Supporters taking part in our London Night Walk

WHAT DID WORLD AUTISM AWARENESS WEEK ACHIEVE? This spring, World Autism

Awareness Week (WAAW) saw a flurry of activity across the country to encourage more people to learn about autism and show their support for people on the spectrum and their families. At the time of going to print, a potential audience of 13 million people heard about WAAW from our charity through broadcast interviews and print or online news articles. As well as raising the profile of autism in the media, the week saw loads of fantastic fundraising, which has so far raised over £117,000 for the NAS. Activities included Onesie Wednesday™, Night Walks, bucket collections and a ‘text to donate’ campaign. Supporters got involved across the UK, including Katie Walters whose poem ‘Stand Out for Autism’ reached 1,026,324 people on Facebook via a Thunderclap share. The week also saw people ‘standing out for autism’, at pink and purple parties, sponsored events and more. This included ‘Epic Dave’ from the adverts for MoneySuperMarket, who have

chosen the NAS as their charity partner. ‘Dave’s’ pictures and videos reached tens of thousands of people on social media. Ahead of the week, we commissioned a YouGov survey of a representative group of the general public. This showed that more people have heard of autism than ever before – over 99.5%. However, another new survey showed that 87% of people affected by autism think the public still don’t understand enough about the condition. Our Facebook post of these figures was shared 14,500 times – which helps to show the importance of deepening understanding, as well as raising awareness. The issue was covered by the BBC, the Independent and other radio stations and websites throughout the week. NAS CEO, Mark Lever, said, “Thank you all so much for supporting World Autism Awareness Week and standing out for autism.” To see pictures and videos, and to find out more what went on, go to www.facebook.com/ NationalAutisticSociety.

Sussex Police have been working with a residential centre for people with autism in West Sussex. By shadowing and getting to know service users, they hope their student officers will get a better understanding of the condition, which they can use to assist members of the public with similar needs. Cat Hogan, Senior Learning Co-ordinator at Hollyrood (which is run by Autism Spectrum Partners – part of charity The Disabilities Trust) said, “The police do not get specific training for dealing with mental health and disabilities within the community… [this] helps start this discussion for them to develop their own practice now and in the future”. We launched an online training module for the police this spring, developed by people on the autism spectrum, including police officers. Find out more at www.autism.org.uk/askautism.

Amazing fundraisers! This March, annual 10k race ‘Jacob’s Leg It’ raised an amazing £6,650 for the NAS. Organiser and Jacob’s dad, Nick, said, “I have actively looked for opportunities to challenge preconceived ideas about autism in the public domain. It’s my hope that seeing or hearing about the event may encourage people to educate themselves about autism or at the very least take a moment before they tut or comment when they see a meltdown.” See pictures from the event at www.facebook.com/jacobslegit.

Royal Patron meets autism professionals In March, our Royal Patron HRH The Countess of Wessex came to the first day of the NAS Professional Conference in Harrogate. She visited exhibits and met and talked to various people working in the field of autism. The Countess has been the Royal Patron of the NAS since 2003.

YOUR AUTISM MAGAZINE

NEWS • SUMMER 2015

Young man with autism inspires Ben Nevis trek for over-12s

Loftus Road: the first major spectator sports arena to receive the award

Scottish teenager Lochlan Carr (15), who has autism, will be joined by other young people on the spectrum and their families in an expedition to climb Ben Nevis this summer. Lochlan started walking more after taking up his teacher’s challenge to the school of trying to get healthier. He then decided he’d like to take it further and do the iconic climb up Britain’s highest mountain to raise money for the NAS. Lochlan was unable to sign up to an official Ben Nevis hike because he’s under 18, so his mum, Ruth, got in touch with the NAS. Events Fundraising Manager, Jock Wright, then decided to organise a new, autism-friendly event especially for young people with autism aged 12 and over. Jock says, “I used to have my own events company so I have contacts and local guides up in Scotland. I’m

AUTISM ACCESS AWARD FOR QUEENS PARK RANGERS FC

Download the easy-read guide at bit.ly/QPR-autism-match-guide.

SUMMER 2015

really excited about it.” Lochlan’s mum, Ruth, says, “I’m really chuffed – Lochlan is really looking forward to it. He’s training hard already!” To find out more or to sign up, visit www.autism.org.uk/ ben-nevis.

It is with great sadness that we announce the death of Jennifer Waddington, who unexpectedly passed away in her sleep in February this year. Jennifer was an incredible supporter of The National Autistic Society, right across our different activities. She was an amazing fundraiser, a highly valued part of the first AutismCon, a passionate campaigner for change and an articulate spokesperson on many occasions from national newspapers to local radio. Tom Purser, Community Campaigns Manager, said, “Jennifer’s autism was a large part of her identity and she wore the label with pride. Her passions for sci-fi literature and board games were infectious and she was one of the warmest and kindest people I have known. Jennifer’s loving husband Chris was very proud of her achievements as a supporter Jennifer: a brilliant of the NAS and beyond.” campaigner She will be deeply and sadly missed.

Get on your bike for autism this August! Our annual Ride for Autism on 22 August will be 50 miles from Cambridge to Thetford Forest. The ride will be followed by a family fun day, with activities, food and fun suitable for all ages! For more information email Elly.Badcock@nas.org.uk.

Lochlan on a practice walk

JENNIFER WADDINGTON – 1976-2015

This spring, Loftus Road – home of Queens Park Rangers (QPR) football club – received an Autism Access Award for organisations committed to being autism-friendly. Stephen Davies, an NAS Trustee and lifelong QPR fan, presented the award to the club before a recent match. QPR fans with autism and their families completed a survey, after which the club devised an action plan. The club’s website now includes an easy-read guide to attending a match. The club have also committed staff to autism-awareness training. It already runs an after-school football club for children with autism and provides sessions for adults attending a local day centre. “The Autism Access Award helped us appreciate how to make match days a more enjoyable experience for visitors with autism. We consider it very much the start of a process in terms of making sure we are doing the best we can,” said Andy Rees, Supporters Liaison Officer at QPR.

SUMMER 2015 • NEWS

Joseph played a member of Fagin’s gang

I’M ONE CAMPAIGN PUTS DOWN MARKER FOR POLITICIANS Our General Election campaign called upon people like you to meet with local political candidates to make sure they understand the needs of people living with autism. The response was phenomenal – you held candidate coffee mornings from Greenwich to North Ayrshire, with many supporters meeting politicians for the first time. After her event, Morwenna from East Ham said, “It felt very positive to be doing something active. I don’t have a lot of trust for politicians. But I found my candidate genuine and caring”. Another organiser said taking part “made us sit down and clarify all the issues”. In addition to coffee

CONSIDER YOURSELF ONE OF US! An I’m One candidate coffee morning mornings, more than a dozen hustings were held in collaboration with NAS branches and local autism groups across the UK. You also told us about the key issues you want us to campaign on. Thanks to the new political support you’ve helped us establish with I’m One, we have a stronger voice than ever with which to do this.

Bratislava or Bust! If you’re looking for something different to do this summer, why not take on this fundraising challenge? The incredible 1500-mile drive across Europe goes through 12 countries. Learn more at www.autism.org.uk/bratislavaorbust.

BIGGEST EVER EXHIBITION FOR AUTISTIC GERMAN ARTIST

Do you remember the cover of the Your Autism Magazine Mental Health Supplement last November? Contributor Rosemary Stephens completed the painting as part of a major art project by autistic artist and writer, Gee Vero. In the ‘The Art of Inclusion’, halfdrawn faces were sent to public figures including the Chancellor of Germany and Temple Grandin with the request to complete the picture any way they liked. The project now includes over 100 pictures and has been shown in several German cities including Dresden and Berlin. This year it had its biggest ever show and is currently exhibiting in

Joseph Green (9) who has autism and ADHD recently performed in a production of Oliver! with Chesterfield Operatic Society. Despite having to manage sensory difficulties, concentrate for long periods of time during rehearsals, and adjust to sudden changes in appearance from costumes and make up, he really enjoyed himself. His mum, Tracey, said, “This was a great opportunity to increase Joseph’s self-esteem and confidence which was taking a battering in other areas of his life.”

AUTISM SHOW 2015 Don’t forget to book your tickets to this year’s Autism Show, which will be coming to London, Birmingham and Manchester next month. The event will showcase expert information, advice, products and services for people living and working with autism. To book, visit www.autismshow.co.uk.

KINGSLEY HOUSE NOW OPEN This year a new NAS residential service, Kingsley House, opened in Bideford, North Devon. Set in a beautiful countryside location close to the coast, adults supported here are able to develop new skills and be a part of their local community. REFERRALS WELCOME from across the UK. Call 01179 748 413 to book a visit.

Gee’s project is now in its fifth year Leipzig. Gee says, “By having exhibitions where and whenever I can, I get people to think about autism, acceptance and inclusion.” View the amazing collection of interpretations at bit.ly/art-of-inclusion.

YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism The transition to secondary school for children with autism

The study looked at reporting by students, parents and teachers

Moving to secondary school is a major change for any child. But does research show that it’s particularly difficult for children on the autism spectrum? Many of us assume that this is the

case, but this is often based on anecdotes and personal experience. Researcher William Mandy and his colleagues at University College London (UCL), Great Ormond Street Hospital and the UCL Institute of Child Health decided that the area required systematic investigation, so that some evidence-based results could be gathered. The researchers looked at the

experiences of 28 young people on the autism spectrum, with an average age of 11, who were making the transition from mainstream primary to secondary school. Using reporting by the student,

parent and teacher, the researchers measured several different aspects of how the individuals were coping in the final year of primary school, and again after one term of secondary school. The things they measured were the students’ levels of emotional and behavioural difficulties, adaptive functioning (ability to adjust to the demands of everyday life) and peer victimisation. Once the reports were all completed

and the results analysed, the researchers found that there was no evidence for a marked escalation of

summer 2015

difficulties during the transition. In addition, none of the children had left their new schools. However, they also discovered

that there were high levels of psychopathology and maladaption (where students had experienced difficulty adjusting to everyday demands) across both sets of reports – those done in the final year of primary and after the first term of secondary. This showed that many children appeared to experience a steady continuation of difficulties across the transition from primary to secondary school. The researchers also found that in some cases, these issues were not being spotted. According to the reports of parents,

levels of bullying fell from primary to secondary school. William Mandy said, “In some ways

we were pleasantly surprised by the findings that, for this group of kids,

their problems did not get worse during the transition to secondary school. However, it’s important to note that these young people did have very high levels of emotional and behavioural difficulties – and these persisted across the move from primary to secondary school. We need to find better ways to support children with ASD in mainstream education”. The researchers concluded that

future studies in this area should investigate factors, such as school characteristics, that influence the move to secondary education for children on the autism spectrum. This information can then help to shape suitable interventions. ● Read the full research paper at bit.ly/15-2-autism-research-1. Listen to the researchers discuss their findings at bit.ly/15-2-podcast.

research • Focus

Major new studies to aid long-term autism research with children, adults and relatives Researchers at Newcastle University are undertaking new studies to gather information about people affected by autism in order to understand more about the condition and how experiences of it have changed over time. The research is made up of two studies. The study from Autism Spectrum DatabaseUK (ASD-UK) and the Database of Children with Autism Spectrum Disorder in the North East (Daslne) focuses on children and families. The other study includes adults and relatives. In the adulthood study, the researchers are collecting information on topics like health, education, support and employment. They plan to keep in contact with participants over time in order to map how their experiences change and develop. Lead researcher Jeremy Parr said, “By collecting accurate information about very large numbers of

people, we will learn more about autism and how things change over time. We think this will lead to improvements in the services available to adults, children and their relatives.” So far, over 3,000 families of children on the autism spectrum have signed up to take part in ASD-UK/Daslne. This has already allowed the researchers to understand more about aspects of the experience of autism in the UK, such as the age children are diagnosed and difficulties with eating, sleeping and anxiety. Find out more at www. autismspectrum-uk. com or by calling 0191 282 1380. If you’d like to get involved in the adults and relatives study, email adultautismspectrum@ ncl.ac.uk. Families of children interested in ASDUK/Daslne, can email asd-uk@ncl.ac.uk.

Mentoring project planned for young people on the autism spectrum Researchers at London South Bank University are working on a pilot project which will look at the benefits of goaldirected mentoring for 16 to 24-year-olds on the spectrum. The researchers plan to pair 12 mentors and mentees in a number of settings such as student mentoring, access-to-work mentoring, and general life-coaching. Each mentor will be trained and screened using inclusion and exclusion criteria and will assist their mentee for one hour per week over a six-month period. The team will measure the perceived benefits for both mentees and mentors using various methods including analysis of report logs, interviews and completion of the Personal Wellbeing Index (PWI) before and after the programme. Funded by Research Autism, the two-year project will have an advisory group which includes people on the autism spectrum. Researcher Damian Milton said, “This project has been led from the outset by the concerns raised by young adults on the autism spectrum around the need for goal-oriented mentoring. We hope it will be of great value in developing ways of supporting young people on the autism spectrum to lead the lives they choose.”

Find out more or get involved • Read more autism research in the Autism journal at aut.sagepub.com. NAS members get a 30% subscription discount. • Could you support vital research work? One of the ways in which The National Autistic Society supports research is by advertising for participants in research projects on our website. To view current research projects which need participants, visit www.autism.org.uk/research/participate.

Y OU R A U T I S M M A G A Z I N E

Readers to the rescue!

Do you have a problem our readers can solve? Get in touch and benefit from the experience of other people living and working with autism.

For expert advice and information

on any autism-related issues, call our Autism Helpline on

Following your interests is one way to meet potential partners

0808 800 8104

I came across an organisation called the Outsiders Club (www. outsiders.org.uk) which might help your son. It looks appropriate for autistic people who don’t have an intellectual disability wanting to date; I have had no personal contact with them. — Caroline

Talk through things with your son honestly, just to be sure that he doesn’t end up with someone who always insists he pays, or who is otherwise using him. — Glen

My adult son wants to start dating but doesn’t know where to start. Does anyone have any advice on how he could meet people safely? — Chris I met my partner at a Taekwondo club. If you go along to clubs or groups where people share a similar interest, it’s a start. I also made some good friends there too! — Elizabeth There would seem to be a body of evidence that many people do find their future partners through work. Especially in larger organisations.

Summer 2015

I met most of my partners through work, as indeed did my parents and grandparents. — Andrew Be careful about dating co-workers, as there may be implications over propriety and favouritism, not to mention possible issues over any fall-out. Be open about your autism and be yourself. If you pretend not to be you, you’re going to get your heart broken. If you fail, pick yourself up and try again. My wife is my special interest and my autism makes that stronger. — Martin

He could try a dating website called Stars in the Sky (www.starsinthesky. co.uk) which is for people with disabilities. I’m a mother of an autistic son who’s only five but I expect will one day need these services. Good luck in your search – love is for everyone. — Yvette

Help me next!

I want to help my daughter to learn to use a basic budget. Can anyone offer any tips on introducing money management? Post your problems or answers on Facebook (www. facebook.com/ YourAutism Magazine), email YourAutismMag@ nas.org.uk, or write to: Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG. By writing to us with either a problem or an answer, you give consent for your content to be published. We reserve the right to edit submissions.

balance How do I? the care of all my

children?

When you have a child with autism, making sure you’re giving all your children the care and support they need can be a big worry. Our EarlyBird Trainer Jo Stevens shares some suggestions for how to keep the balance, gathered from the 400 families who have attended one of the NAS parent support programmes at the EarlyBird Centre in Barnsley.

BY JO STEVENS

any families tell us that they often feel guilty about spending more time and effort with their child who has autism, at the expense of their other children. Siblings often report that they feel they miss out on their parents’ time and attention and that family life is dominated by their brother or sister who is on the spectrum. However, not all of the effects on siblings are negative and many develop patience, tolerance and understanding beyond their years and may choose to work in a caring role as adults, using their experience and understanding of autism to benefit others. Sibling relationships without the inevitable rivalry, jealousy and discord are rare in any family. When one child has autism, these feelings may be more frequent or exaggerated. An awareness of the challenges faced by siblings and a proactive approach from parents can, however, help to redress the balance and make family life more positive and enjoyable for all. Remember that sibling relationships will change from day to day and year to year depending on the relative ages and life stages.

PLAN OUT A BALANCED APPROACH

BE FLEXIBLE

Always insisting that you should do things together as a family can be particularly difficult for siblings. Billy (8) said, “When we go out, I like to go to McDonalds and collect the characters like all my friends but my brother will only eat in Burger King so we always have to go there”. Employing a little flexibility around who does what in the family can be a good idea. This will help the sibling feel less resentful and that his or her needs are equally as important. In this example, one parent could take Billy to McDonalds while the other goes to Burger King with his brother.

Proactively scheduling in time for each child in the family can help siblings to feel that they are getting their fair share of time and attention from parents. Knowing that a particular time is their ‘special time’ with Mum or Dad will help siblings to tolerate the times when the focus in on the sibling with autism. Some families suggest using a lucky-dip box with photos of favourite activities so that all the children get an equal opportunity to choose what the family will do over the weekend. For example, the child with autism might choose the activity for Saturday afternoon while her brother chooses for Sunday. Parents can decide which activities go into the box depending on available time (and money!)

SUMMER 2015

HOW DO I? • FEATURE

DEVELOP SHARED INTERESTS As well as being flexible, it’s important to spend some time together as a family. Identifying and engaging in activities which are enjoyed by all the children will help to build positive sibling relationships, even if only for very short periods of time. Having just a few 30-minute slots for family time each week will be far more beneficial and stress-free than attempting a full-day outing every Saturday.

BE KIND TO YOURSELF

Trying to achieve the unachievable by being the perfect parent to all your children, all the time, will only result in feelings of failure when things inevitably don’t go according to plan. Take time out for yourself as you’ll be unable to support any of your children if you are burnt out and unwell. Arrange for a family member or friend to watch the children while you have a bath, go to the shops or even wash the car – whatever gives you the opportunity to enjoy some ‘me time’. Babysitting circles for families affected by autism or additional needs can be helpful when you need a break. Many parents use their local authority’s short break provision. Ask your local family information service what is available in your area.

COMMUNICATE Depending on the age and stage of the sibling, share information with them about autism and how it affects their brother or sister. Talk to your child about how they feel. Reassure them that it’s okay to feel embarrassed or angry sometimes and discuss possible solutions. Janet has three boys, two of whom have autism. Her 12-year-old daughter, Annie, was getting really angry with her younger brothers who were going into her room and tampering with her make-up. Together, they decided they would buy a treasure box with a combination lock where Annie could keep her precious items safe. Some families actively include siblings in meetings with autism professionals in order to help them understand autism and build feelings of inclusion.

ATTEND SIBLING GROUPS Sibling or young carer groups can be a valuable way of supporting siblings and helping them to appreciate that they are not alone. These groups provide opportunities to spend time together having fun, talking about feelings and being supported by and supporting others. This can help to offset the day-to-day pressures of living with autism for a young child. Local autism support groups may offer particular activities exclusively for siblings or for the whole family. Ben (10) said, “I love my brother having autism because if we didn’t go to the support group I wouldn’t have been able to go rollerblading or ice-skating.”

Useful resources

• Brotherly feelings by Sam Frender and Robin Schiffmiller: www.jkp.com/uk/brotherly-feelings.html. • Can I tell you about autism? and Can I tell you about Asperger syndrome? by Jude Welton, illustrated by Jane Telford: www.jkp.com/uk/series/can-i-tell-you-about.html. • For our range of books for siblings, visit www.autism.org.uk/books-for-siblings. • Young Sibs is a charity for brothers and sisters of disabled children. Find out more www.youngsibs.org.uk. • More information about EarlyBird training for families is available at www.autism.org.uk/earlybird.

YOUR AUTISM MAGAZINE

MY STORY • Feature

My story

Sara, David, Beth, George and Daniel Living with autism can be hard. But when your family is affected by other disabilities in addition to autism, being parents can mean a truly unique set of challenges. Mother-of-three Sara Herriott told us about the difficulties they’ve faced as a family along with the unexpected joys and rewards.

hen George was diagnosed it was a big shock, even though we already knew something wasn’t quite right. He was delayed with his milestones, both physically with walking, and with talking. At around 18 months we took him to the paediatrician, knowing his behaviour wasn’t quite as expected. By the age of two it was more apparent – he was getting obsessed with things rather than taking notice of people. Getting that diagnosis was a bit like a bereavement in a way. I called the NAS Helpline and they put us in touch with an expert on autism who lived locally. She came to visit and confirmed his diagnosis. I remember saying to her, “Oh, that means he’ll never drive a car or get married or anything”. But she reassured me that he wouldn’t necessarily mind as much about these things as I would. That helped. His autism affects everything, but in particular George gets very physically angry. When he was very little he would do things like throw chairs around once a week. It’s not so hard when they’re young but as soon as he hit the teenage years it got a lot worse. He also gets very anxious and we wondered if he was depressed for a period. George also has epilepsy. He is

S U M M ER 2 0 1 5

on medication for it but more recently we’ve been trying to wean him off it due to the side effects, but that resulted in some seizures. The medication makes him a bit chubby which he sometimes gets upset about. When they were little, it was hard for George’s older sister, Beth. I remember they had terrible fights and she would get hurt and bitten. But it has helped her become a wonderful, caring person. When our third child, Daniel, was born, it took about a week or so to realise there was something wrong. He has severe cerebral palsy, learning difficulties and cannot talk. I remember thinking “Oh my gosh – is there something wrong with this one too?” It was awful to realise we had two children with problems. But Daniel is the most joyful little boy, he’s really happy. It’s amazing how things don’t turn out as expected. We had thought we’ll have a third one who can help with George. But in fact Daniel has brought out the caring, empathetic side of George’s character. Now George is living away from home, Daniel is the one I think he misses the most. Daniel needs 24-hour care. He’s in a wheelchair, needs to be fed, changed, and has had lots of operations. When he had to undergo major spinal surgery, George was really worried

about him and his behaviour at school deteriorated. He just wanted to be with his brother to make sure he was okay. Dave and I job share as GPs, which allows us some flexibility. David will work for the morning and I’ll go in once he’s home to do the afternoon and evening surgery. Being doctors takes away some of the anxiety around hospitals and appointments, but we’re still just parents really. It’s a terribly demanding job, and you come home feeling very tired. Though often not as tired as the one who’s been at home looking after Daniel and George! After mainstream primary was too much, George went to a special school for mild learning difficulties. When he was eight, they said they didn’t feel able to support him and suggested a residential school down in Dawlish called Oakland’s Park, which turned out to be great. George would stay there during the week and come home at weekends. This continued till he was 17 when the school suggested he needed to move on. They had done their best and were being fair – he’d simply outgrown it. They were very encouraging and told us things would improve. During the course of that summer when George was at home, we had a truly awful time. He was violent towards me – hair pulling, slapping,

“Daniel has brought out the caring, empathetic side of George’s character.” Y O UR AUT I S M M A G A Z I N E

George now lives in residential care but comes home every few weeks

kicking and wrecking the house. Afterwards we would both be really upset – it was very hard. Dave remembers opening the front door after a particularly vicious attack and telling him to just go! During this time, social services provided a support worker to help us. My advice for other parents would be that if the teenage years are coming up, expect some problems, but they will pass. Don’t be afraid or too proud to ask for help. After that, George moved to Pathfield School in Barnstaple for his final year of secondary education. His teacher there, Pete, was excellent and the year worked out well. It is awful to think how desperate we all were that summer, but so amazing that we seem to be coming through it all now. When it came to transitioning into a residential service, social services were really helpful in placing him and understanding our situation. When both George and Daniel are at home, there’s always a concern that Daniel could be at risk. We knew that George would never intentionally harm him but when he’s angry you never quite know. During his final terms at school, George gradually transitioned to Bornel Care, a beautiful set of residential cottages in the countryside for people with different types of disability. He first went there for respite one weekend a month so he could gradually get used to it. Then, once his adult funding started, he moved there full time. He now comes home about every third weekend, but the transition between home visits and going back can still be a struggle. George has good relationships with his carers who keep him busy with trips like going to the zoo, walking and shopping. As a family we are always limited in where we can go because of Daniel so it’s good for George to be able to get out and about a bit more. He also goes to a local college two days a week, where he’s made a few friends, to

SuMMer 2015

“For me, the hardest thing about family life is being different.” learn small animal care and life skills. All the other residents at Bornel are non-verbal, but he does have a relationship with them all – especially his ‘cottage-mate’, Sam, whom he looks after in the same way he looks after Daniel at home. It’s very sweet. For me, the hardest thing about family life is being different. It’s hard when colleagues and friends do things which you are unable to do, like going off on skiing holidays at the drop of a hat. You work hard and want to be able to go away and enjoy your leisure time. Dave took George skiing once and he enjoyed mucking around in the snow, but it’s difficult to go away with both George and Daniel. We tend to go to a self-catered cottage in the countryside somewhere. As Daniel gets heavier our options are limited further as we need to go somewhere that has a hoist. But now that George is in a residential service,

Share your story

we’re able to get respite care organised for Daniel. In October, Dave and I went to Spain – just the two of us – which was lovely. It was the first time we’d been away together, with no children, for 21 years. We’re planning to do that again this summer. It is a blessing having three lovely children. We wouldn’t be without them. It’s wonderful when we get together and everyone is happy. I’m so glad we have Beth who is a great help, especially with George. In the special needs world you meet some really amazing people. Having a strong marriage makes things easier and we’re Christians as well, which helps us. We have a good network of friends, and Dave’s mother lives locally and is able to help us out sometimes. It’s hard to say what will happen in future. George will always need support, so I think what he’s learning at college at the moment is more likely to lead to voluntary than paid work. But it would be great if that was a possibility. He may eventually transition into supported living. Though I would love it if Daniel could eventually live with George where he is now – that would be wonderful, for them to be together.●

Would you like to share your story about any aspect of living or working with autism? Please email YourAutismMag@nas.org.uk or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, and we may feature you in a future issue.

AUTISM-FRIENDLY DESIGN • FEATURE

Designs

for living How a space feels, sounds, looks, smells and functions can be incredibly influential on how many people with autism experience the world. We asked some experts why getting architectural and interior design right is so important. DR MAGDA MOSTAFA is a worldleading expert on designing built environments for autism. A special needs design associate at Progressive Architects, she developed the first ever design framework on the subject. We last interviewed her ten years ago, so wanted to ask her how things have moved on since then. “The concept of sensory environment is still central to the process of autism-friendly design. Discussion continues in autism literature about how sensory perception links to behaviour. This feeds into the ongoing conversations around how to create environments for people with autism in the design world. “Some issues have become more central in the debate, such

as generalising skills outside of customised environments. Also, alternative approaches argue for the need for immersion in a sensory-filled environment, rather than a sensorymitigated one. “In the last decade, the main shift in attitudes I’ve seen relate to a general rise in awareness. When I first began studying autism in 2002, I always had to preface every conversation with a definition of what autism is, but in general people are now better informed. It seems to me a growing population of individuals and families with autism have gained a voice. Organizations like the NAS are central to this shift, and to expanding the conversation about specialist design beyond just schools and learning environments into homes and workplaces as well.

“I have always believed in the power of architecture to shift people’s lives” — Dr Magda Mostafa

“Legislation also has an effect. Attention towards the importance of autism-specific design grows as health insurance and education policies worldwide expand to include autism within their requisite coverage. “There is still a lack of awareness about how much environment can affect people with autism, and architects are often unaware of the need to bring in specialists. In addition, because autism is an extremely complex condition which affects each person differently, autism-friendly design requires a conceptual framework to be interpreted rather than a set of hard-and-fast rules, which is what architects are used to when designing for people with disabilities. “I have always believed in the power of architecture to shift people’s lives, to provide their basic needs, to make them interact differently with one another. Few user groups are in more need of the possibilities offered by effective architecture than those with challenges and special needs, and no group among those can benefit more from the sensory input that the built environment provides, than those with autism.”

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FEATURE • AUTISM-FRIENDLY DESIGN

Andrew with his daughter, Amy

Autism-friendly design at the New Struan School in Scotland

ANDREW LESTER led the design team for New Struan School – a purpose-built school for children with autism in Scotland. He is also father to Amy (37), who has autism. He tells us about the design process.

DR MOSTAFA’S ASPECTSS™© Design Index sets out her framework for autism-friendly design. They can be applied on a smaller scale at home, as well as by professionals.

COMPARTMENTALIZATION

ACOUSTICS

Using transition zones helps the individual recalibrate their senses as they move from one level of stimulus to the next. These spaces may be anything from a distinct node that indicates a shift, to a full sensory room.

Control acoustics to minimize background noise, echo and reverberation to suit the individual and level of focus required. Use sound to aid transition.

SPATIAL SEQUENCING Design spaces in a logical order based on use to support routine and predictability. Use one-way circulation so people can move between activities as seamlessly as possible with minimal distraction.

ESCAPE SPACE Provide space for respite from the overstimulation of the environment. This might be a small, partitioned area or crawl space in a quiet section of a room or building. Make the sensory environment neutral and customisable.

SUMMER 2015

Organise a space or building into compartments with clear functions and sensory qualities which help define the use. Separate spaces using furniture, floor covering, floor level or lighting.

TRANSITIONS

SENSORY ZONING Organise spaces according to their sensory quality. This means grouping spaces into ‘highstimulus’ and ‘low-stimulus’ areas with transition zones aiding the shift from one zone to the next.

SAFETY Safety is especially key for people who may have an altered sense of their environment. Alterations might include using hot water safety fittings and avoiding sharp edges and corners.

“When Amy was six, I remember reading Autistic children: A guide for parents and professionals by the late Dr Lorna Wing, at the recommendation of a consultant psychologist. In the characteristics that were described, I saw my daughter jumping out of every page. Amy had already started at Struan House School by then – but it confirmed for us that she was in the right place. “I had been advising on property matters for the Scottish Society for Autistic Children, with which I had become very involved. That was when I became very interested in the idea of autism-friendly design. “The architectural firm I worked for designed buildings that – by law – had to be accessible and easy to use for people with physical disabilities. So I thought, why not make buildings accessible and easy to use for those on the spectrum, too? “I was asked to lead the design team at my firm to look at building a new school for Struan House School. At the time, it was very unusual to have the opportunity to design a school like this from scratch. We were starting with a blank canvas. “As a parent, I had an insight into autism and how it affected at least one person – Amy. Many of her behaviours were ‘classic’ and so when I was thinking about important factors in the design – such as clarity, light,

AUTISM-FRIENDLY DESIGN • FEATURE

“When I was thinking about important factors in the design, I was thinking about how Amy would react.” — Andrew Lester ability to see what is coming up, space, clear lines of movement – I was thinking about how Amy would react. I also knew about the need for robust but friendly materials, good acoustic control, indirect lighting and safe heating systems. “I worked very closely with the staff at Struan. We spent many hours working out what the difficulties were for the children at the school and how we could resolve them through design, organisation of the spaces and attention to detail. I also visited other schools which showed me what contributed to an autism-friendly environment and also what got in the way. “The biggest challenge was deciding if certain approaches to design would work. For example, the bright atrium, the open-plan resource centre off the internal ‘street’, the clear glass panels in secure partitions which would allow pupils vision but no access and the flexible lighting. We had no benchmark and weren’t sure they were right – but I am pleased to say that in the end they all worked really well. “We were nervous about how the pupils would react. I remember on the day it opened, I stood as inconspicuously as possible in a corner and watched the students arrive. They came in the front door and made their way to their classes. Within half-an-hour the place was silent. The pupils were working and everyone was happy. I was so pleased to see even difficult pupils moving around the school as if they had been there forever. “I am not an expert and have learned lessons from New Struan but I still think that we have a long way to go. Too many autism-specific buildings are being designed with no knowledge of the condition. Only by improving the environment will people with autism have a greater chance of coping with the world that they often find confusing.” ●

INTERIOR DESIGN As well as a building’s architecture, thoughtful design inside is key to completing autism-friendly rooms and buildings. Interior designer Kelly Barker, who has a particular interest in autism, explains the main things to think about. “Creating autism-friendly spaces doesn’t have to be expensive – the important thing is to tailor the environment to meet the specific needs of the individual by understanding how their autism affects them. “The texture, colour and designs of different materials and fabrics you use in a space can have a sensory impact on individuals, both visual and tactile. Too much patterning or complexity in textile designs can be distracting and over-stimulating. “In colour schemes, a variety of colours can be great but it’s important to think about brightness and how the colours are interacting with light sources in the room. Muting bright colours can help create a calmer environment. “Lighting is also very important. Direct, fluorescent lighting can be problematic for individuals with

hyper-sensitivity, as it can distort vision and cause headaches and other issues. Where lighting is too severe, a simple solution is to add diffusers over the light source or to use controllable dimmers. “It’s good to use natural light where possible, but think about glare and how the light may be bouncing around the room as a result of things like shiny surfaces on furniture. “Finally, sensory areas can be designed using LED strip lighting around the walls and in voids. It’s easy to change the colour and you can buy them from any good lighting shop. Lava lamps can be a cheaper alternative to bubble tubes and provide a similar sensory experience.”

Kelly works with schools and services to improve interiors for people with autism.

Find out more • Find out more about the ASPECTS™© Design Index at www.autism.archi, and Progressive Architects at www.progressive.archi. • Dr Mostafa will be speaking at our first ever conference on design in November. To register your interest, go to www.autism.org.uk/conferences/design2015. • Kelly Barker is the founder of Just Living Interiors. Find out more about her autismrelated work at justlivinginteriors.co.uk/what-i-do/design-for-autism. • We are currently advising the architects of a new set of purpose-built autism centres at mainstream schools, funded by the Cullum Family Trust. Find out more at www.autism.org.uk/cullum-autism-centres.

YOUR AUTISM MAGAZINE

LAUREN LOVEJOY • INTERVIEW

Lauren wants to inspire people with autism to achieve their dreams

We are

warriors

Lauren Lovejoy hit the public eye in autumn 2014 when she appeared on ITV’s The X Factor, having reached the Miss Universe Great Britain Final earlier in the year. Eager to pursue a career as a performer, she’s also passionate about helping people on the autism spectrum to grow their confidence. BY ELEANOR WHEELER

What led to your diagnosis of Asperger syndrome? I was diagnosed at the age of 14, but I wasn’t told about it till a few years later. My mum knew I was being picked on at school and thought that if I’d had a label it would make it worse. But I don’t think she realised how bad the bullying was. The other kids always told me not to be a snitch so I didn’t talk to her about it much. They would use me as a goal post – the girls would hold me down and the boys would kick footballs at me. My face ended up getting pretty badly damaged, which I became more self-conscious about as I got older. When I was 17 I went to the doctor to ask about getting it fixed. It was at that point, when we were sitting in the doctor’s surgery, that my mum told me that I had Asperger syndrome and suggested that was perhaps why I was so worried about my face. How did you respond when you were told? I’d never heard of Asperger syndrome. My mum said she’d explain more when we got home. I didn’t understand – I thought she had said ‘asparagus’ syndrome so I thought it was something to do with vegetables! I also

wondered if it was similar to Down’s syndrome. I knew I had learning difficulties, but I always thought the quirky things about me – like loving the feel of different fabrics and seeing people as animals – were just part of my personality. I now understand that things like my high sensitivity are linked to having Asperger syndrome. I can be naïve and trusting which has resulted in some tricky situations in the past. I’m still noticing things now about my behaviour which my diagnosis helps to explain.

Inspirational: Lauren sees her autism as a gift

“If parents are positive it really, really helps the child to be positive as well.”— Lauren

When you got a bit older, did it affect your ability to work? I had wondered why I never seemed to last long in the jobs I did. I do come out with inappropriate things sometimes. When I worked as a shop assistant, I’d sometimes tell people what animal I saw them as! I remember saying to one man, ‘Excuse me, you’re a goat. I see you as a goat’. Some people didn’t like that. Whenever I got sent home from a job, I would panic as I needed the money. I realised eventually that my diagnosis meant I could access DLA. I worked out that to do my dream of singing, I’d be selfemployed. This seemed like a good option. I felt that being a singer would mean there would be more room for quirkiness and creativity, so I would be able to keep the job for longer. Has your attitude towards your diagnosis changed at all over time? I’ve become a lot more positive and open. I want to encourage other people with Asperger syndrome or autism to break through the barriers they are up against and not to give up on what they want to do. Was it an easy decision to be open about it? I’ve never been shy! When I first learned about my diagnosis I just went around saying ‘I’ve got asparagus syndrome!’ I don’t know if that’s normal or not – it’s probably just my personality. If I didn’t have Asperger’s

YOUR AUTISM MAGAZINE

INTERVIEW • LAUREN LOVEJOY

Lauren reached the X Factor Boot Camp last Autumn

I might not be as creative as I am now. I see my autism as a gift, not a disability. How and when did you first become interested in singing? At school I was asked to perform in the school play. Another girl didn’t show up so I had to take her place. I sang to this audience of all the children that bullied me. I remember it was the first time I felt in control. Everyone was really shocked when they saw that I could sing. It felt amazing. Are you inspired by Susan Boyle? Yeah, she inspires me. She just went up and did what she wanted to do. And why not? She just did it – she didn’t let the condition hold her back. How do you feel when you’re performing on stage? Amazing! It’s the most wonderful feeling, especially when you’re performing in front of an audience who are there especially to see you. When I was younger people didn’t notice my talent but I remember doing early performances and all of a sudden realising I was inspiring people. I feel like I’ve overcome loads of challenges in my life. I do get nervous when I first go on stage, but it’s a good feeling and I think it’s necessary to perform well. Are there any aspects of the condition which you feel are

SUMMER 2015

“I’ve had loads of bad stuff happen in my life, which means I sing with a lot of emotion and the audience doesn’t just hear the song, they feel that emotion too.” — Lauren positives in your life and career as a singer? I think because of my Asperger’s I’m creative and quirky. If I didn’t have it, I don’t think I would have as much passion. I’ve had loads of bad stuff happen in my life, which means I sing with a lot of emotion and the audience doesn’t just hear the song, they feel that emotion too. Singing also helps me to feel relaxed. What’s your proudest achievement so far? I achieved so much in 2014. I was awarded two titles in the Miss Universe Great Britain Final. They were ‘Miss Not in Vain’, for empowering people with autism to do what they wanted with their lives, and ‘Miss Congeniality’ for being the most likeable contestant. That award was voted for by all the other girls and was a really big achievement for me, considering at school everyone seemed to hate me! What’s your ambition for the future? I want to be a well-known singer and also an actress. I love adding a bit of comedy into things, so I’d love to act

in sitcoms. My biggest inspirations are Audrey Hepburn and Paloma Faith. Do you have any message to our readers who are on the spectrum and are finding things tough? I’ve been through so much crap, and getting past it is all to do with selfbelief and positive thinking. If parents are positive it really, really helps the child to be positive as well. Even if someone isn’t expressing themselves, they can feel when something’s not right. So staying positive has a huge effect. I once tried to speak to a girl at an event who wouldn’t talk to me at all. She wouldn’t even look at me. But later on, she added me on social media and was so positive and expressive. I talk to her all the time online but I know that if I were to meet her again she wouldn’t talk to me. Every day, having Asperger syndrome is like being a warrior because every day, we face challenges. But, because we do face them, every day we are super heroes. Whatever you want to do in life, don’t let anything get in your way. ●

Find out more • Follow Lauren on Facebook at www.facebook.com/laurenlovejoyofficial and on Twitter @laurenlovejoy6. • Lauren performed at AutismCon: Festival of the Mind earlier this year. Keep an eye on our website for updates about next year’s event.

FEATURE • Lifelong learning

No end to

education Whether pursuing an academic interest at the most advanced level or working on a new practical skill from scratch, learning as an adult can help give meaning and purpose to life. It can also help to develop skills in other areas. We asked two people whose autism affects them in very different ways to share their experiences of learning as an adult. BY ELEANOR WHEELER

Dr Marion Hersh is a Senior Lecturer in Biomedical Engineering at the University of Glasgow. Her current work includes developing assistive technology to help people with disabilities. Diagnosed with Asperger syndrome in her midfifties, she identifies as autistic. “My interest in learning is part of me and I also consider it natural to be interested in learning. Being autistic helps me to make unusual connections and see aspects of things that neurotypical people possibly do not see. It often gives me a very strong focus and enables me to concentrate on things for much longer than other people. “Learning can have practical benefits with regard to both personal development and obtaining knowledge,

skills and qualifications which are useful in a career. It can help to keep older people mentally alert and engaged with life. Successful learning can also contribute to increasing self-confidence and self-esteem, but this generally requires appropriate conditions to learn that lead to success. Many autistic people are also interested in finding out all they can about autism and the experiences of other autistic people in order to better understand the barriers and problems they experience and find solutions. “After doing really well at all subjects at school except art, I studied mathematics at university. I was not particularly happy there. I had a period of a year when I was laughing uncontrollably (which was not particularly funny) followed by an extended period of depression.

“There is this universe of new knowledge to be explored and I want to have as much of it as possible.” — Dr Marion Hersh 28

SUMMER 2015

I could probably have benefited from mentoring, including explanations of what was required, and separate rooms for exams. Some support for social interaction might also have been helpful. “I then did an MSc by research and a PhD in mathematical aspects of engineering. I cannot remember now whether I decided I wanted to work in a university or whether this came from my parents. After moving around a few different subject areas, I now do research on a mixture of assistive technology, disability studies and technology and ethics. “For about ten years before getting an official diagnosis, I had gone through a process of deciding I had Asperger’s syndrome. I felt it was something I had to work out for myself. I eventually sought a diagnosis in order to get reasonable adjustments at work. Having a diagnosis enabled me to state ‘officially’ that I am autistic. However it is the fact of being autistic – not a formal diagnosis – that is important to the autistic people participating in my research. Like many disabled people I do not want special treatment. But I recognise that there are barriers

Craig’s new skills: making pizza

Dr Hersh sees learning as an automatic part of life

which need to be removed to prevent disadvantage and discrimination to me and other autistic and disabled people. “I am still largely unaware of what is going on around me and what other people think, which makes me also unaware of university politics. I have been elected three times to my trade union. The first time was a real surprise, as I considered myself too different/weird (which probably translates as ‘too disabled’ or ‘too autistic’) to be elected. It was therefore a very empowering experience to realise that colleagues were more concerned about what I stood for. “Learning is fun, though it can be hard work as well. It is exciting and challenging to learn about new things and acquire new skills. There is this universe of new knowledge to be explored and I want to have as much of it as possible. In many ways continuing to learn is automatic and one of the things I do because I am alive.”

CraiG DraKeLY lives in Catrine Bank, an NAS residential service in East Ayrshire, Scotland. Craig has been learning new baking skills and has made amazing progress. He has autism and complex learning difficulties and is registered blind. Q. What do you like to cook? Craig: “Sausage rolls, pizza.” Q. What is your favourite food? Craig: “Pizza.” Q. Who helps you with cooking? Craig: “Tracey”.* Day Service Practitioner Tracey Harding has been working with Craig for the past 18 months. “Craig’s activities include music therapy, going walking, and going out for lunches in the community. But baking and cooking seem to be his Craig’s baking is going from strength to strength

favourite. The staff in his house say when he wakes up in the morning, the first thing he says is ‘Cooking with Tracey!’, and when he hears me coming he’ll shout my name and run towards me! “Since I’ve known him, Craig has always been very independent – so the learning part has been to do with knowing the procedures around the cooking, like washing his hands with soap and putting on his apron. “He has some sensory issues. When he started he didn’t like to get his hands dirty and would put his face up close to hot pots and pans as he liked the smell of the food, which was a safety issue. But lots of praise has encouraged him to learn what he can and cannot do in the kitchen. Now he does it off his own bat. “When Craig started with me he would only do shortbread or chocolate cookies – but now he’ll do anything. His diet was never fantastic as he didn’t like trying anything new. But now he’s very good at making pizza and has his own pizza pan, he makes gravy, sausage rolls, scones – all sorts of things. “Craig transfers his skills to his own living environment where he’s supported by a fantastic team of *Thanks to Karen Kerr, Craig’s Speech and Language Therapist, for conducting this interview. YoUR aUTiSM MagaZinE

FEATURE • LifELong LEaRning

Craig with Tracey (right) and Support Worker, Megan

“Sometimes it seems to be a fear of the unfamiliar which stops Craig trying things he then enjoys” — Tracey Harding support workers who help him to continue to learn. They think there is a direct link between the cookery skills he’s learning and an overall willingness to try new things. I think it’s because he now understands the boundaries and rules of the kitchen, which means he can focus on learning the specific cooking skills. “We’re trying to get him to try new things and will do tasting boards and things with him. For Craig, feel and smell has a lot to do with it. We recently made a puff pastry ﬂan, and to get him to try it we called it a pizza. He ate it and liked it. Sometimes it seems to be a fear of the unfamiliar which stops him trying things he then enjoys. “I love my sessions with Craig – it’s been so positive. I do two sessions with him a week now. I think his improvement is about building up trust, too. It’s a positive experience for both of us – and it’s just fun! “As for the possibility of these skills leading to a job, the capability is there – but Craig would always need staff support. He is really very good at making pizzas now – I’d love to take him to a pizzeria to see professionals at work.” ●

SUMMER 2015

WHY IS LEARNING SO IMPORTANT FOR ADULTS ON THE AUTISM SPECTRUM? By Damian Milton, Head of autism Knowledge and Expertise (adults and Community) at The national autistic Society. Damian is on the autism spectrum. Due to personal and social barriers, many people with autism may not have previously been in an environment where they can learn in a way that suits. Everyone should have access to educational opportunities, not just due to instrumental reasons such as better chances of employment, but for personal growth and fulﬁlment. Unfortunately, many on the autism spectrum are so put off by their school or indeed college experience, that although they may have a love of learning, they feel alienated from such places of learning. Adult education needs to be welcoming and understanding of the needs of people on the spectrum and often this is not the case. Much more investment is needed, particularly in the further education sector.

We are all different and have our own unique talents, but attributes such as intense focus and interest, perseverance and diligence, fairness, and critical appraisal, can all be strengths of autistic learners. We are not all computer specialists; there are also people on the spectrum who have a love of art, theatre, social science, philosophy, DIY, music – in other words, a vast diversity. Given the ‘spiky profile’ of abilities people on the spectrum often show, they need to learn at their own pace and in an environment that suits their learning style – which can be highly idiosyncratic. However, when one finds a tutor or mentor one can build trust and rapport with, and who shares an intense interest, the resultant benefits can be huge.

Find out more • For information on education after leaving school, visit www.autism.org.uk/ further-and-higher-education. • Share what you like to learn about on our Community at community.autism. org.uk or on Facebook at www.facebook.com/YourAutismMagazine.

ADVICE • HOUSING OPTIONS

Housing for adults: understanding the options Working out the best housing option for an individual adult can be a challenge. Whether they are transitioning to adulthood or their options are under review, it’s important to have an understanding of what’s available.* By Hannah Barnett and Clarissa Manuel-Jones

istorically, most people with autism and complex needs went into homes and hospitals. But this model has really changed. Now, many parents and carers decide to support the individual at home. Local authorities (LAs) usually prefer this option due to the high costs of residential care. There is also much more emphasis on the individual needs of the person with autism, whose preferences should always be considered in decision-making. Residential care A lot of families prefer residential care because it’s seen as safer and enclosed. Having a fixed staff team means there are lots of people around to deal with any issues. Local authorities generally only agree to fund people with very high support needs for this type of care. However, it has limited long-term security; a manager can serve notice on an individual if they think it necessary.

Residential care is the best option for many adults

A “To new discuss condition called the housing and care options social communication for yourself or the adult that you care for, disorder has been added.

the first step is to contact your/the person’s social worker or the duty social worker if they don’t have an allocated worker.”

Supported living In this model, an individual lives in a house or flat and pays rent which in most cases is covered by housing benefit. It’s more secure than residential care in the long term as the individual is the direct tenant, meaning they have ‘security of tenure’. Homeowners can also receive supported living services in the form of support packages. Supported living allows for more independence and personalisation. It is often an option for people who have a fairly high level of support needs but not as high as for residential care. It is sometimes offered as an alternative

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ADVICE • HOUSING OPTIONS

to residential care with 24-hour support in place. It can be a good option for someone with complex behaviours which would be disruptive in a communal setting. Living with family and attending day services Here, an individual lives with their parents or carers and goes to day services during the week. For parents and carers, this option can provide respite to allow them to work. It’s local (in theory) and social. However, it offers no particular long-term security. Respite services – when an individual stays in a service overnight for a short, fixed period of time – can give parents and carers the chance to go away for a few days. Living with family and using outreach services This is when an individual lives with their parents or carers and is taken out by a care worker to do something specific for several hours. As with day services, this option is local (in theory) and provides respite. Many parents and carers like that it provides one-to-one attention. There are risks associated with not having a ‘fixed base’ or other staff around in case there is an incident. For this reason outreach services can be harder to staff. Personal Budgets People sometimes fund their supported living or other care through a personal

Supporting living can offer more independence. budget provided by their LA. Many people like the flexibility this offers. Some choose to employ a friend or relative (who doesn’t live with them). Other people don’t like the paperwork that comes with being an employer, although there are organisations that can help with this.

Find out more

Other options There are other options available, many of which may be more suited to people with lower support needs. Most LAs now offer Shared Lives Schemes, in which a person lives with a vetted Shared Lives Carer. Schemes like Keyring involve several people living close to each other in their own rented houses or flats, supported by a local keyworker. ●

Community care For help with accessing social services support for a person under 40, contact our Community Care Service. Email communitycare@nas. org.uk or call the autism helpline: 0808 800 4104.

“Both residential care and supported living can be paid for by the LA, following a financial assessment to see whether a person needs to contribute to their care costs. Paying privately for services is also possible – but this costs too much for most people.”

nas transition support For help with transitioning to adulthood, contact the NAS Transition Support Team (see page 41).

Housing support For support with housing for someone over 40, contact our Autism and Ageing Specialist Adviser. Email advice40plus@ nas.org.uk or call the helpline. Housing advice Get general housing advice from Shelter: www.shelter.org.uk.

*Please note that the information in this article is primarily aimed at people who aren’t able to live independently and require substantial support from family or a substantial care package. SUMMER 2015

ADVICE • CARE ACT

How will the Care Act affect you? The Care Act 2014 came into force last month, introducing a major shake-up to the social care system in England. Dan Leighton, our Policy and Parliamentary Officer, explains some of the key changes and what they mean for people on the autism spectrum and those who support them. BY DAN LEIGHTON

HE CARE ACT introduces a single law to replace existing complex legislation around adult social care, new duties for local authorities and partners, and new rights for service users and carers. These include new rules on who qualifies for publiclyfunded care and support, a stronger focus on wellbeing and prevention and a new safeguarding framework to protect from abuse and neglect. Care and support services, such as practical assistance at home and support with engaging with the community, are often vital in enabling the independence and wellbeing of people with autism. Thanks to action taken by thousands of our campaigners, The National Autistic Society’s Careless campaign helped ensure the new rules on who gets support better reflect the basic needs of people with autism. Who will receive an assessment? The Care Act requires councils to make sure any adult with an appearance of care and support needs, and any

Support with day-to-day tasks can be crucial for maintaining wellbeing

carer with an appearance of support needs, receives a needs assessment. If you request an assessment you (or the person you care for) should receive one regardless of where you are on the spectrum, your IQ or your financial situation. The Care Act also requires councils to undertake ‘transition assessments’ if a child, young carer or adult caring for a child is likely to have needs when they, or the child they care for, turns 18. This is regardless of whether the individual currently receives any support from children’s services.

which means they should be trained in autism. If they lack sufficient experience of autism, they are required to consult someone who does have experience. The council must arrange for some people to have an independent advocate with them at the assessment. This applies if you don’t have someone else to support you (like a friend or family member) and you have substantial difficulty communicating what you want to say, understanding information given to you or making decisions about your support.

What happens during an assessment? The assessment is how a local authority decides whether a person is eligible for publicly-funded care and support. The assessor will look at the outcomes that matter to you and the impact your needs have on your wellbeing. The council has a legal duty to ensure these needs are met. Assessors must be able to carry out assessments of particular conditions,

Who will be eligible for care and support? The Care Act introduces a single national eligibility threshold that will apply across the country. Eligibility cannot be restricted beyond this level, which is comparable to the old ‘substantial’ eligibility banding used by most councils. The Care Act also introduces for the first time a duty on councils to meet the eligible needs of carers as well

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ADVICE • CARE ACT

The Care Act 2014: Eligibility Criteria Outcomes for adults with care and support needs ■ Managing and maintaining nutrition ■ Maintaining personal hygiene ■ Managing toilet needs ■ Being appropriately clothed ■ Being able to make use of the adult’s home safely ■ Maintaining a habitable home environment ■ Developing and maintaining family or other personal relationships ■ Accessing and engaging in work, training, education or volunteering ■ Making use of necessary facilities or services in the local community, including public transport, and recreational facilities or services ■ Carrying out any caring responsibilities the adult has for a child Outcomes for carers with support needs ■ Carrying out any caring responsibilities the carer has for a child ■ Providing care to other persons for whom the carer provides care ■ Maintaining a habitable home environment in the carer’s home, whether or not this is also the home of the adult needing care ■ Managing and maintaining nutrition ■ Developing and maintaining family or other personal relationships ■ Engaging in work, training, education or volunteering ■ Making use of necessary facilities or services in the local community, including recreational facilities or services ■ Engaging in recreational activities

as the individual with needs for care and support. An adult with care needs will qualify for support if their needs assessment shows: 1. the need for support is due to a physical or mental impairment, or an illness 2. the person is unable to achieve two or more of a list of specified ‘care outcomes’ (see above) 3. this has a significant impact on the person’s wellbeing. A carer will qualify for support if their needs assessment shows: 1. the need for support is due to

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providing necessary care to an adult 2. the carer’s physical or mental health is deteriorating or are they are unable to achieve any of the specified care outcomes (see above) 3. this has a significant impact on the carer’s wellbeing. How might the eligibility criteria address the specific needs of adults with autism? Our Careless campaign helped to secure two key components to the final eligibility criteria that are particularly

The Careless campaign helped make sure the Care Act’s eligibility criteria are relevant to people on the autism spectrum

important for adults with autism. Firstly, the expansion of ‘maintaining family or personal relationships’ to include developing relationships as well. One in four adults with autism tell us they have no friends and the type of support they most want is help to improve social skills – so this expansion is crucial. Secondly, the eligibility criteria state that ‘being unable’ to achieve an outcome includes not being able to do so without assistance. The Careless campaign made sure that ‘assistance’

The Care Act requires councils to support carers as well as the people they support

What about the rest of the UK?

includes the need for ‘prompting or supervision’ as well as physical assistance. Sixty five per cent of adults with autism told us they need prompting to wash, dress and prepare a meal. What happens after an assessment? If you are not found to be eligible for support, the council must still make written advice and information available about how any needs could be met, reduced or prevented. This should include signposting to relevant services available in the community. If you are found to be eligible for support, the next stage is to draw up a care and support plan, or in the case of

a carer with eligible needs, a support plan. You should be involved in developing this plan, with help from a family member or advocate if needed. Your care plan should be reviewed by social services within the first three months, and then at least annually. ●

The Care Act applies to England only. Find out more about current social care law in the other UK regions: ■ Wales: www.autism. org.uk/social-servicesand-wellbeing-bill. ■ Scotland: bit.ly/ Scotland-adult-socialcare-integration. ■ Northern Ireland: www. transformingyourcare. hscni.net.

Useful websites and resources • Learn more about the Care Act at www.autism.org.uk/adult-socialcare-england. • For advice on accessing social care support, contact the Autism Helpline on 0808 800 4104 or email communitycare@nas.org.uk. • Access Care Act resources for carers by Carers UK at bit.ly/carersukcarers-faq. • Read Department of Health Care Act fact sheets at bit.ly/DoH-care-act-2014.

YOUR AUTISM MAGAZINE

Rachel and NAS transition support staff

Spotlight on Transition Support Services

How the NAS can help you Rachel Babbidge is The National Autistic Society’s Transition Support Service Coordinator. Rachel researches and prepares resources for young people and their families to help them understand the transition process. She tells us how the service can help.

hat transition support services do we have at the NAS and who do they support? We offer a free service to help students make the transition from specialist or mainstream school to adult life or further education. We also have a Transition Development Team to advise families about what NAS adult and community service options are available in their area. Our specialist volunteer information providers offer confidential information and advice by phone and email. The guidance we offer includes topics such as finding suitable provision, personcentred planning, making a complaint and appealing against a decision. For each person we support, we do a personalised assessment to work out what’s needed. What are the questions you hear most often? We’re often asked about the availability of services in a particular area and how families can make sure

their child’s opinions and wishes are listened to meaningfully and acted upon. Problems can occur if planning begins around 17 or 18 years old. Starting the process so late leaves little time to make decisions. We are actively engaging young people from the age of 14 to begin early planning for the transition to adulthood. Do you have any examples of people who have benefited from the service? One parent said, “I would like to thank you so much for your support and help through this horrendous

“Many young people and their families are not aware of their rights and so the transition process for them is unsuccessful.”

ordeal, without your advice and input I feel I would not have had the strength to fight my daughter’s corner.” What stands in the way of the right support reaching more people? The lack of understanding of autism and its impact on young people’s lives can lead to risks not being appropriately identified. Many young people and their families are not aware of their rights and, as a result, the transition process for them is unsuccessful. Our service aims to change this by engaging and empowering individuals and their families and ensuring that they are fully supported. For advice and support from our Transition Support Service, email transition.support@ nas.org.uk or call 0808 800 0027. To contact our Transition Development Team about NAS adult and community service options email transitiondevelopment@nas. org.uk.

Did you know?

The service is funded by our supporters, like you. Without that help, it would be unable to continue – so thank you. Visit www. autism.org.uk/getinvolved to find out how you, your friends or family can donate or fundraise to help us continue our work.

YOUR AUTISM MAGAZINE

RESOURCES

Lives with Autism AUTHOR: Steve Mee PUBLISHER: M&K Update Ltd PRICE: £25.00 VERDICT: A wide-ranging yet strongly structured anthology that effectively bridges the perspectives around autism. THE ESSAYS in this anthology come from parents, professionals and people with autism. They are sometimes funny, hard-hitting and generally interesting accounts. The questions they raise could encourage non-professionals and professionals alike to think hard about autism and the issues around it. One improvement might be to have included more than one voice in the evaluation, to create a dialogue rather than a single perspective to bring together the different strands. It would also have been interesting to find out more about what the contributors thought of each other’s accounts. Overall, the anthology sets a very high standard and is accessible to both professionals and non-professionals.

Giveaway The winner of last quarter’s competition to win a selection of advice books is Alyson from Southampton. Congratulations, Alyson! For a chance to win one of ten copies of How to fly with broken wings by Jane Elson, email yourautismmag@ nas.org.uk with your name and contact information by 10 June.

Reviewed by former NAS Participation Support Officer, Leo Capella, who is on the autism spectrum. To order books recommended by the NAS, go to www.autism.org.uk/amazon.

Our six favourite… Shows and concerts this summer

THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME In this acclaimed dramatisation of Mark Haddon’s novel, 15-year-old Christopher sets out to solve a murder mystery. The show is currently touring the UK, with a relaxed performance planned for 2 July at the Mayflower Theatre, Southampton. Find out more at www.curiousonstage.com/tour.

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MUSIC FOR AUTISM This charity puts on autism-friendly classical concerts for people on the autism spectrum and their families. Performances are planned for May, June and July at locations across England. Find out more at www.musicforautism. org.uk/concerts.php.

DISNEY’S THE LION KING This coming-ofage tale follows Simba on his journey to fulfil his destiny as King of the Pridelands. The next autism-friendly performance is planned for 30 August at the Lyceum Theatre, London. Find out more at www.lionkingautismfriendly. co.uk.

RESOURCES

Head, Shoulders, Knees and Toes Mr Tumble

SLEEPPHONES HEADPHONES

MANUFACTURER: Golden Bear Toys

SUITABILITY: 10 months +

(www.goldenbeartoys.com) PRICE: £29.99 SUITABILITY: 10 months + VERDICT: Great for stimulating sensory needs and speech, if a little expensive.

VERDICT: A good, flexible alternative to regular

OVERALL, WE REALLY ENJOYED the toy. My son is eight and is extremely sensory. He loves Mr Tumble on the TV. There are lots of different buttons to keep your child interested and interacting. My son kept pressing for more instructions and when the toy spoke he began to repeat the words back. Mr Tumble is a great toy to bring out if your child is having a meltdown as the talking and textured body is a good distraction. The few issues we had were that the button on his hand was not actually in the middle and the volume was very quiet compared to other toys. It is quite expensive, but I would recommend it. Reviewed by Jessica Conway, NAS Mid Ulster Branch, Northern Ireland

THE TWITS Mr and Mrs Twit are not very nice. In fact they’re extremely nasty. This adaptation of Roald Dahl’s beastly tale by Enda Walsh is currently on stage at The Royal Court Theatre, London, with a relaxed performance on 16 May. Learn more at bit.ly/the-twits-RCT.

MANUFACTURER: SleepPhones (www.sleepphones.co.uk) PRICE: £34.99

headphones. MY FIVE-YEAR-OLD son, who has autism, normally wears his big, bulky headphones to listen to music and block out the outside world. These headphones are a comfortable alternative for him and are particularly good for journeys or to use in bed. The speakers are completely removable from the headband which means it can be washed – always a bonus with a small child. The headband also means they can be easily worn under a hat too, which is good for when it’s cold. They come in a wireless, Bluetooth version too, which is great for wearing in bed in case you nod off. I would recommend this product and consider it great value for money. Reviewed by Veronica Colliety, Chairperson of the NAS Renfrewshire Branch, Scotland

MATILDA THE MUSICAL A well-loved story of a little girl’s empowerment, Matilda is brought to the stage by The Royal Shakespeare Company with music by Tim Minchin. The next relaxed performance will be on Sunday 14 June in London. Learn more at uk.matildathemusical.com.

THE TIGER WHO CAME TO TEA Based on the book by Judith Kerr, this ‘classic tale of teatime mayhem’ is currently touring the UK. A relaxed performance is planned for Friday 4 July at the Theatre Royal in Newcastle. Learn more at www.thetigerwhocametotealive.com.

YOUR AUTISM MAGAZINE

ISAAC RAYMOND

I’m a fashion designer! Brighton teenager Isaac Raymond is already making his mark on the catwalk. His talent and love of fashion are helping him overcome difficulties.

SAAC (16) WAS diagnosed with Asperger syndrome when he was seven. His parents noticed he seemed a bit different and was very creative. He’d always been interested in fashion and never used to go out without dressing up, mixing and matching home-made and ready-made clothes. Isaac started making clothes with his mum, using some fabric and a mannequin he found on eBay. He went on to do some sessions with The Fashion School, an after-school club in Brighton, where he now teaches. Isaac says that his Asperger syndrome used to affect him a lot more, and when he was younger, sudden loud noise would make him jump and get angry. Although he feels reasonably comfortable talking in front of large groups of people, small groups can still be a struggle. Isaac says, “I’ll want to speak to people but I’ll not know what to say. Then when I leave I’m flooded with all the things I wish I’d said. My diagnosis is not something I’d choose to bring up unless I was asked. Fashion is the main thing – I’m more than happy to talk about it if it comes about as a result of talking about fashion.” For Isaac, his love of fashion has been a way to overcome problems and he feels it has really proven what he is capable of. This year, Isaac helped a milliner at London Fashion Week and is starting to

Isaac showcased some designs at AutismCon earlier this year build a network in the industry. He wants to go into couture and hopes to show his designs at Paris Couture Week in the future, where celebrity buyers often visit to select dresses, which are then hand-stitched to make them into the perfect fit. As a big fan of Lady Gaga, Isaac would love to dress her one day. He loves fantasy and says that he is always open to new things. His latest collection brings together taxidermy and fashion using things like wings and skulls. “I enjoy designing things that wouldn’t usually be seen as normal by the rest of the world,” says Isaac. “I like to create things that make people feel different emotions – whether that’s shock, excitement or fear.” When working on a design, Isaac mostly feels pure excitement, although it can sometimes be frustrating. His advice is to stay focused. “If there’s something you’re good at or enjoy doing, stick to it and don‘t give up, no matter what people say. Honour your talents and don’t take them lightly. You might have a natural talent for something but you need to work at it. Don’t feel down if you get something wrong because it takes practice.” ●

If you have autism or know someone with autism doing something amazing, we’d love to hear about it. Email YourAutismMag@nas.org.uk. Message us on Facebook at www.facebook.com/YourAutismMagazine.

SUMMER 2015