The National Autistic Society is the UK’s leading charity for people affected by autism.

Over 500,000 people in the UK have autism. Together with their families they make up over two million people whose lives are touched by autism every single day.

Despite this, autism is still relatively unknown and misunderstood. Which means that many of these two million people get nothing like the level of help, support and understanding they need. Together, we are going to change this. ll them The National Autistic Society “If I te 393 City Road London EC1V 1NG how I feel, Switchboard: +44 (0)20 7833 2299 Autism Helpline: 0845 070 4004 en they’ll Minicom: 0845 070 4003 th Fax: 020 7833 9666 Email: [email protected] d.” Website: www.autism.org.uk understan their own words The National Autistic Society is a company limited by guarantee ults with autism in registered in England (No. 1205298) and a charity registered in Ad England and Wales (269425) and in Scotland (SC039427), registered office: 393 City Road, London, EC1V 1NG.

ISBN: 978-1-905722-51-8

Editor: Lisa James “If I tell them how I feel, then they’ll understand.” their own words Adults with autism in What is autism? Contents

Autism is a lifelong developmental disability that People with autism may also experience some Foreword by Jonathan Shaw MP, Minister for Disabled People 2 affects how a person communicates with, and form of sensory sensitivity or under-sensitivity, relates to, other people. It also affects how they for example to sounds, touch, tastes, smells, Introduction by Keith Duffy 3 make sense of the world around them. It is a light or colours. spectrum condition, which means that, while all 4 people with autism share three main areas of Asperger syndrome is a form of autism. People Mark difficulty, their condition will affect them in with Asperger syndrome are often of average or Carl 6 different ways. Some people with autism are able above average intelligence. They have fewer to live relatively independent lives but others may problems with speech but may still have Dave 8 need a lifetime of specialist support. difficulties with understanding and processing 10 language. People with Asperger syndrome do not Peter The three main areas of difficulty (sometimes usually have learning disabilities but may have Christine 12 known as the ‘triad of impairments’) are: specific learning difficulties, including dyslexia. Mohamed 14 social interaction . This includes recognising Louise 16 > and understanding other people’s feelings and 18 managing your own. Not understanding how Thomas to interact with other people can make it hard Russell 20 to form friendships. Patricia 22 social communication . This includes using 24 > and understanding verbal and non-verbal David language, such as gestures, facial expressions Sue 26 and tone of voice. Gary 28 social imagination . This includes the ability to > understand and predict other people’s About The National Autistic Society 30 intentions and behaviour and to imagine situations outside of your own routine. This can be accompanied by a narrow repetitive range of activities.

1 Foreword Introduction I m

I am delighted to introduce this booklet, which As the parent of a child with autism, I know what a g e

brings together the experiences of a number of a difference the right support can make. My c o u r t

adults with autism interviewed as part of The daughter, Mia, was diagnosed at 18 months and, e s y

National Autistic Society’s 2008 I Exist campaign. while I was fortunate enough to be in a position o f I r i Autism is a serious, lifelong and disabling to get her the support she needed, I quickly s h A

condition which affects different individuals in realised how many other families were facing the u t i s different ways. Everyone with autism deserves same future without help. m A c t

the opportunity to reach their full potential, and i o the right support at the right time can make an As Patron of Irish Autism Action, I hear from n enormous difference to people’s lives. many people with autism who have struggled for years to get the support they need, and from Many adults with autism are isolated and parents and carers who are frustrated and ignored, unable to access the required support exhausted by the constant demands placed and often completely dependent on their families. on them. Through the I Exist campaign, The National Autistic Society is seeking to change this and With the right support in place, the outlook can That’s why I’m so delighted to introduce these ensure that adults with autism receive the be so much brighter. Three and a half years after stories to you. It’s fantastic to be able to hear the support they need. she was diagnosed, my daughter came into the voices of adults who have shared their room and sang ‘Tomorrow’ from Annie for me experiences with the NAS: the stories are In this booklet, the adults interviewed as part of and my wife. It was the first time we had ever fascinating, moving and funny and I hope you’ll the campaign share their experiences, good and heard her voice. Now aged eight, Mia had her take a lot from them. I’ve found them truly bad, of having autism. I am extremely pleased to first Communion this year. She brings us great inspiring – and I’d love to meet Louise (p16) and be able to share their words with you, and to joy every day, but I still worry about what make her dream come true! support the NAS in helping adults with autism to tomorrow holds for her. have a voice, and to have control over their lives. Keith Duffy It’s an absolute disgrace that so many people Patron, Irish Autism Action Jonathan Shaw MP with autism are still denied the help they need to Minister for Disabled People achieve their potential and – unlike Mia – aren’t able to make their voices heard.

2 3 Mark

How would you say you spend an average day? Are you a member of any clubs? How would you assess that understanding at Just depends. I sometimes can be quite Do you go out regularly and see people? the moment? spontaneous and just do different things... If I meet people from time to time… not as much as The public understanding, I think, is not very you’re doing nothing it’s incredibly boring; then if I’d like it to be, and that’s the kind of thing I need high because they’ll tend to think of the word you’re doing too much it can be, like, stressful to work on – the social skills... I do write for a autism and they’ll think of Rain Man or... and then there’s “ah, how am I gonna fit all this newsletter and go to a Learning Disability someone who can’t speak or someone that in?”... But I’m getting better at dealing with that. I Partnership group. It’s good for your self- can count toothpicks on the floor but can’t think you get more used to it… you’ve got to confidence cos you think, “yeah, I can stay on do anything else or can’t have a relationship, push yourself out of that comfort zone. this level – I can stay, you know, on the same or can’t interact… It’s not easy but I think you’re better level as everyone else and that’s good...” When I for it afterwards. was volunteering it was very rewarding… making How would you like to see yourself in five connections with people. You could tell they were years time? You’ve already shown me quite a lot of your genuinely happy to see you, they were genuinely Well, I’d like to see my social skills developing, photographs – is that your main hobby? looking out for you, genuinely wanted to speak to feeling more confident around people – just being I just like capturing the moment. In your life, that you, wanted to interact with you, wanted your like anybody else... to be better at reading moment never comes round again, and that time. people, better at assessing situations, better at picture is like a memory of that particular seeing what is going on... my perception being a moment. Is there any form of support that you feel lot better and just being naturally at ease and Mark is 33, lives with his dad and was you need that you’re not getting? better with other people… from that comes diagnosed with autism and ADHD I think an understanding generally of autism... things like friendships, like jobs, prospects – your about two and a half years ago. He The common trait with autism and other own quality of life. For me, quality of life is enjoys photography, football and neurodiverse conditions is the sensory overload paramount. part, and it’s [about] understanding that. So, for reality television but although he feels example, [if I am] going into a job, there might be Would you like a partner and children? able to live relatively independently, he certain aspects – 90% of it I’m fine with – but Have you got any offers? You wouldn’t have would like more opportunities to develop maybe things like the temperature or noise that’s anyone in mind? Yeah, [it would be] nice to meet just gonna affect [me] in that way... I’m asking the right person. Adding the autism into the mix his social life. He has a degree but for a bit of an understanding of what makes it a bit more difficult, but, you know, I’m has struggled to find a permanent job. it’s like to be autistic. sure I’ll get there... just, you know, it’s not easy, it’s difficult. I’m not the nightclub type of person.

Some photos taken by Mark, 4 who is a keen photographer. 5 Carl

Tell me what you do on Mondays to Fridays . You want to...? What kind of DVDs do you like? Yes, you say something now about you. Mondays I go to college, Tuesdays I do lots of Whoosh it. I like to hear the DVD of stories about me. I’d love to be on The Weakest Link... washing, Wednesday I do the hoovering, I wanna say “Welcome to The Weakest Thursday I pick up the phone and Friday I go to Whoosh it? More than you like music? Link”... Can I be on The Weakest Link college. Yes. I like to hear music with me. like Anne Robinson? Can you do that for me? Do you like doing the washing ? What do you like to do most [outside home]? You mean music that you can sing, like a Yes. I like to walk. Karaoke? I can’t organise that for you, no. Yes. I’m sorry. But that’s what you’d Why’s that? Do you like the people [you see]? most like, is it? Because I don’t think it’s not gonna slow down I like the people. So who do you sing with? Yes. when it’s spinning. Everybody… there’s a load of people that needs Do you like talking to people? to sing. Do you know what I mean? You like the washing machine spinning ? Yes. Yeah. What do you think about having autism? And would you like to have some kind of job? I don’t know. And you go to a centre too, don’t you ? Yes. Just for a few hours. I done that. Do you think it’s a good thing to have? What kind of job? Yes. Carl is 20 and lives in a residential What things do you do there? This kind of job. service with two other people. He has Well, I think I do just things. What do you like about it? autism and learning disabilities and Using a I think everything’s to do with it, isn’t it? What else do you like to do? microphone receives support from a number of staff I like to do the hoovering. on a laptop Everything in your life is to do with it? to enable him to enjoy a structured and making Yes. weekly routine. He visits his parents Do you like the noise DVDs? regularly and spends his days in college that it makes? Yes. And is that a good feeling, or not? Yes. I like it… I want to That’s a good feeling... can I ask you something? and a day centre. He likes sound and whoosh it, like. relishes the opportunity to hear himself on Yes. a DVD or speaking through a microphone. Can I ask about me?

6 7 Dave

“My wife has four children – my step-children – “There wasn’t anything at all in [the adult mental “I know a lot of people think Asperger’s people and I have three children... they’re all very aware health] service, there’s no specialised diagnosis. are, you know, cold and very machine-like... we of things I find difficult. I have sensory issues with Because I had been diagnosed with dyslexia very come across as that, but that’s a real myth… we noise, especially after wearing headphones all early on in life... I just put all my symptoms down appear aloof because we don’t particularly day... I find noise very, very difficult… I have to dyslexia. I thought that because I was dyslexic know how to communicate well...” incredibly good hearing and I can hear a pin drop it caused acute shyness and it meant I didn’t like in a room 200 yards away… I find – because looking at people’s faces... I can’t read body with Asperger’s, it’s all coming at you at language at all... I’d much prefer, if somebody’s once, everything’s at you at once – if I’m got something to say, that rather than giving trying to watch the TV I get very, very grumpy if body clues, [they] just come out and say it. somebody’s talking. So they tend to try and whisper, which actually drives me even more “I’ve been in the same job for twelve years now... mad... The children are normally pretty good I’m an Audio Producer, so I produce audio Dave lives in his own home in Wales with about this... but if two of them try to talk to me at documentaries – lots of different types, his wife and children, one of whom also has once I get very cross very quickly because I just sometimes museum tours, sometimes a radio Asperger syndrome. Although he has worked can’t remotely cope with that at all. documentary. At the moment I’m doing successfully for the same company for over something for satellite navigation systems... “They’ve known for a long time because… [my I’m a sound designer and that’s been my a decade, he finds social relationships son] had his diagnosis [of Asperger syndrome] obsession since before I can remember. outside of his immediate family difficult. before me. I sat down and explained to them ‘this The stress caused by dealing with people all is how [he] feels’, ‘you can’t shout at [him]’, ‘you “The Human Resources department at work know can’t expect [him] to do this’ or ‘you can’t expect about my diagnosis, and that’s it. I very much said day led him to resign from his management [him] to understand this because…’ I don’t want anybody else knowing particularly. role and return to a more technical job, which he does from home. “I went to my GP and said I’d like a diagnosis for “I worked my way up, which I didn’t enjoy doing “I work from home, so I’m here all the time, Asperger syndrome and he turned around and at all... business [is] all very cut-throat and it’s 365 days a year, and I am quite reclusive. I don’t said ‘that’s just something that children have’. Oh about stabbing people in the back... I just hated particularly like going out. I enjoy walking the dear. So I printed off a section from a website to it, completely. But I got up to European Studio dogs and I like doing photography, but I tend to give to your GP about Asperger’s, laminated it, Director and did it for, oh, a year and the stress stay in the house. and took it to him and said ‘look - all those was too much and I wanted to get back to children you talked about grow into adults working with sound. and this is what happens’ . He was actually 8 really good after that. 9 Peter

“I get depressed from time to time. I get really “When [my daughter] stays with me it’s brilliant “I have been told I am the life and soul of the “I was lucky to have made it through but unlucky exhausted and then I lie awake at night... the because I love her to bits. She is really good… I dinner party but, to be honest, it is because I am not to have been diagnosed. I think getting process of going to the doctor [about my love having a kid…I get stuck when I am on my so nervous. I can’t handle it. I will just talk and diagnosed early brings in a lot of services. You depression] led to me being diagnosed [with own just sitting, but when [she] is there I know I because I have had a colourful life, I have loads know that saying, ‘falling between two stones’? Asperger syndrome]. Since then I have had no have to have a tidy house because I want to be a of stories... I am very uncomfortable in social If you are quite high-functioning, there is a big support from my doctor. good role model. So my house is usually clean, situations... I go over things in my mind and problem, because on one level you don’t need but it is extra clean when she is there. worry about what I have said... I feel that much help but on the other it is crucial you get “I was born in 1964 and [my diagnosis] was in everything I do is an approximation of normality. something.” 2001. What is that – 36 years? The way I speak is made up, the eye contact is a trick I learnt... I read in “I have a lot of negative experiences where I a book how to do it. If my energy levels drop know that I am right but there is no way that a) I think I seem quite odd to people. It’s I can express myself or b) get people to express embarrassing. It exhausts me. or join in with me… I get really frustrated and instead of staying and going mental, I leave. So, “I think things are already better [for people with I leave relationships, I leave bands, anything you autism]; for example there are three autistic Peter is in his forties and lives alone in name I’ve left it. If I could stop that, then my life children in [my daughter’s] class and they have Scotland. He had a negative experience of would be different. classroom assistants to help them. If you are diagnosed young, [there are] a lot of books school and was homeless for some time as “This is my problem – my doctor doesn’t know about children, although there is not much for a teenager, although he believes that the anything about Asperger’s and the people that autistic adults. In fact, one of the doctors said situation for children with autism is now know about Asperger’s can’t medicate... I am ‘oh don’t be ridiculous, you only get that if you improving. He has a supportive social fairly high-functioning [and] a lot of the time I are a kid’, like it was a rash or something – and don’t need any help, but I do [sometimes] and I that is from a GP as well! worker but finds that the other people who am unable to get it… when I am feeling bad work with him lack the knowledge of and can’t leave the house, that is when I Asperger syndrome necessary to provide need the help and that is when I will not be able to access it. him with the support he needs.

10 11 Christine

Do you see a lot of your family? What about in the evenings? Do you usually Have you found it useful? Is there any change that you would particularly A bit too much actually! I see my family every stay here, or go out? Yes. I get on with him... and I settle in with the like to see happening [in the future]? night and I see my brother every two weeks. The evenings can be boring because one of the other staff as well, you see, when I’m there, and I would like to see myself being more forward in frustrations which I have is there are things going go out at dinner time. Sounds good, doesn’t it? social skills. Although to a certain extent it’s And you live here in this house on your own on... but I’m not invited. Now, I’ve been told That’s why, you know, to stop it is gonna be… down to me, it would be nice if services were that your parents bought for you – is that right? several reasons for this. One of the reasons is around for me to use... Yes. that it may not be my fault, because people tend Can you say something about the people you to go in groups and if it’s groups and you’re not know well – your family, anybody you regard as What is the greatest change that’s needed in What do you do each day? part of that group… a close friend? policy or in services would you say? On a Monday morning I go and do some I haven’t got any close friends. More staff and less cutbacks, then there’d be voluntary [work] to keep me occupied... I do a …it’s difficult for you? less complaints, less suicides, less frustration dressmaking class on a Monday, and then on a It can be, but that can apply to a lot of people, so What about your family? in people. Tuesday I used to do a class but that closed. I’m told. The other [is] that most people feel it’s I get on with them reasonably but they’ve got Wednesday – well, Wednesday is college... it’s a awkward having a single person attached... Now, their own way of understanding [my Asperger word processing course and the manager also I was told that there are lots of ways of looking at syndrome] and that’s hard... My disagreements helps me with social skills while I’m there... that as well and I have had advice on how to with people upset and hurt them and they get Thursday my mother comes around... and then very cross and frustrated about it. But what I’ve handle all this... Friday I do my voluntary help again... and then but I still don’t like the been told is that… the more close you are, the Saturday, it’s generally whatever’s going on on fact that I can’t be [involved in ] more difficulties you can have like that. Christine is 52 and lives in Wales. She was a Saturday. social things. in her forties when she was diagnosed with Can you talk a bit more about this reaction that Do you use any services in addition to further Asperger syndrome. Although she finds you feel in other people where they don’t education? understand? Do you feel that they aren’t social skills support very valuable, there are I go to [a project] in Cardiff to learn social skills... sensitive enough? real concerns that the support she it is not vital to go every week, but it would be Sometimes I feel that way, yes. I think currently receives will not continue in the nice if it could be continued for a longer period that people should be made aware and of time. try and accept it better - of course I long term. This is particularly worrying as feel that. it is social skills support that Christine How soon is it due to end? feels makes the biggest difference to her They can’t afford the taxi after twelve weeks. life - she feels she lacks meaningful social relationships outside her family. 12 13 Mohamed

“I’ve been worried about the future lately... It “Sometimes I go to a respite place and stay Mohamed’s daily diary looks like I’ll be staying at home just for a little there with my friends... it’s quite good... [I go] while longer – just for a few more years... every few months... I’d like to go for a weekend > I get myself up at about 8:00 away with the respite place because… some of > I make my toast “[I’d like to] get married and have kids, and when my friends have been away [for the weekend] a > I get washed, put deodorant on Mohamed is 22 and lives with his my wife will say to me one day that she’s long time ago. and brush my teeth pregnant, we’ll get a house of our own to > I get changed parents. Although he currently has a live in. I don’t know where we’re going to “I hope I’ll be going back to a day centre very > My taxi comes at about 8:30 to take me to work busy and active life, which he enjoys, get married, either in a wedding soon... It depends. When I tried it in September > I sort and deliver the post he is very anxious about the future reception or in a church, I don’t know two years ago I didn’t like it... but I liked it in and constantly worries about its actually... My Mum said to me February last year, so I’d like to go there again > I go on a computer to write computer work nobody knows what’s going to soon... It depends what my new social worker > I go for my lunch at about 12:00 uncertainty. This is exacerbated by the happen in the future... but I’m from social services will say. It depends what my > I do the mail for e-services fact that, once he reaches 25, he will still worried about the future Mum will say and what the staff will say. We’ll > I sometimes do filing no longer be able to attend many of quite a lot lately … I mean, I left have a meeting and decide if I am going back. It school a long time ago. depends really, I’ve got to wait and see. I’ve just > My taxi arrives at about 2:30 the services he currently benefits from. been worried about it for a while... nobody knows > When I get home I change into my what’s going to happen in the future… football clothes > I play ‘Who wants to be a Millionnaire?’ on DVD “I’d like to leave home in the future, but I’m not > I listen to some music ready to leave home yet. I’m too young to leave > I have plain pancakes for my dinner and watch TV home... I know that some of my friends have done a residential college year for three years > I leave home at 5:40 in my Mum’s car to go to football and I miss them when they’re not here... I went > When I get back home I just chill out and rest for a visit with my Mum one day – we went to a > I have my supper at 10:00 college far away. Apparently, I was supposed to > I watch TV that I’ve recorded called ‘Emmerdale’ go there but it closed down. I was very upset > I practice piano on my keyboard when it closed down because I was so > I have a shower looking forward to going there... I went [for a few link days] to a college in Manchester but I > I listen to the Qur’an didn’t like it there…” > I go to bed.

14 15 Louise

“I live here on my own with my cat, Charlie. I live “We fill envelopes, put paperwork together, do “I go to college to do a computer course... and in a little village... which is very nice. It has loads photocopying. It’s just all sorts really... there’s a it’s absolutely brilliant because I absolutely love of lovely shops. It has a lovely coffee shop called few people with disabilities who work there. it. But I’m thinking about doing a course [to be] a Costa Coffee. It has the bank. It has a People who have Down’s syndrome, who have support assistant, helping people with severe newsagent. It’s very, very tiny, but it’s a lovely autism, people in wheelchairs... they just phone autism and challenging autism. village. me and tell me to go in and I’ll go in. It just depends how many days they want me. “My dream is to meet Keith Duffy, who used to “My Mam and Dad bought [this flat] for me, I be in Corrie and who has an autistic daughter. I’d think it was three years ago now... They live just “I worked at [a supermarket before] for six months like to go to Ireland and meet him... I would like five or ten minutes away, so I can get a taxi from – absolutely loved the job, but I didn’t see eye to to actually go over and say, ‘look, I have the here, or walk from my flat to their house, which I eye with the manager. I basically walked… I was same disability’… that would be like a dream of like doing. I’m probably going this weekend, and very upset and he got me very stressed. mine.” probably some of next week as well. “They don’t understand my disability [in other “I have my carer, Annie, who comes [to the flat] jobs]… I do explain and they still don’t every day and cooks for me, does ironing and understand. You know it can be very hard for different things. She’s lovely, she’s like another people with autism. People just think we’re mummy to me. I have Zita, my au pair, who’s not normal and we can’t do everyday lovely, and we just do everything together really... things, which we can. I go out to work, I’m Louise is 27 and lives in a flat which I go to the supermarket and buy my own food very independent, and they just don’t understand was bought for her by her parents. and Annie cooks it for me… she’s brilliant... I am and they don’t appreciate us. It’s very hard… Although she has a good support system very happy, yeah. but in this job, they’re very nice, and very helpful and pleasant. and receives Direct Payments, much of “My Dad and my Mam deal with my Direct this is set up and maintained by her Payments, so I don’t really have anything to do “I don’t think at school they understood me at all. family. Poor awareness of autism meant with that.” I was bullied, mentally and physically, and it was that Louise had a bad time at school absolutely awful. Louise currently works for UR Sorted 1, a and she is now passionate about the professional mail out service organised by United need for everyone to have an Response and staffed mainly by people with understanding of autism. learning disabilities.

1 16 www.unitedresponse.org.uk/ursorted 17 Thomas

“For the past five years I have been seeing three “For the past seven or eight weeks I have been “The last [paid] work I did was in 2004 and that was “If I could get help from professionals with an different psychiatrists and two psychologists. My doing some voluntary work [for a charity]... That in a bank. I stopped that in May 2004; my understanding of autism and Asperger syndrome, formal diagnosis of Asperger syndrome has been good because there is no pressure on depression was getting really bad... I had a major who deal principally with adults, I feel I would happened in October 2005. you and you do not need to interact with other panic attack – there was a girl opposite me and she move forward at a much faster rate.” people, you just get told what to do and then you was concerned… but there were three other guys “Prior to being diagnosed with Asperger just need to focus and concentrate... The last working there and, because they weren’t expecting syndrome, I was on quite a lot of anti- voluntary work [I did] was working in a soup it and they didn’t know what was happening, they depressant medication and a lot of anti- kitchen with the homeless, which I did for five were just kind of laughing. This was making me psychotic drugs – very high doses of it given to years. About eight or nine weeks ago I decided to more agitated and more distressed because it is me over a period of 14 years. The medication is stop doing it because the level of anxiety I was not as if you can flick a switch and come stable just now; it’s not able to help at the moment feeling while doing it was affecting my mood. down from your agitated state . I felt as if it Thomas is 33 years old and was diagnosed with my Obsessive Compulsive Disorder [OCD] was a kind of flight response – I had to get away with Asperger syndrome in his early thirties. but the depression is a lot better. I need help and from the situation that was causing the anxiety… support 24-hours a day from my parents, mainly I haven’t worked since. The lack of autism-specific services near his from my Mum. Expert help for Asperger’s and home in Scotland has slowed his progress and, OCD is impossible from where I live. despite seeing a number of professionals over “The support [I get] at the moment is basically the years, he has not been able to benefit just CBT [Cognitive Behavioural Therapy] but the from seeing someone who understands person has no experience of working with people Asperger syndrome. Lack of understanding of with Asperger syndrome. autism, both from professionals and from the “There seems to be no help on a practical level general public, is one of the main issues for someone of my age and intelligence, and no Thomas feels needs to be addressed. work suited to my qualifications. I know that at the moment I couldn’t do a paid full-time job but would like someone to help me within a supportive environment... All my mother feels when she goes to seminars is that they [only] have provision for children up to about the age of 14.

18 19 Russell

Russell is profoundly affected by autism and uses Russell has some self-help skills, such as making Russell’s daily diary very little language. toast. He does not choose the food he eats, though he particularly relishes curry and rice, 7am 6pm He lives happily with a loving family - his mother, Walkers crisps and Cherry Coke. He has recently to whom he is very attached, and his father, who learned to shave, with his Dad’s support. He can > I get up, go for a shower and clean > I have my tea, then I go on the internet is the site manager at a local school. His sister is also shower himself, but his Dad gives him a bath my teeth. to look at cats. married with a child and remains in close touch every weekend. > I get dressed, have my vitamins, have a > I go out on Tuesday and Wednesday with the family. She lives locally and often takes shave and put deodorant on. Sometimes evenings. On Tuesday, to shop with Russell out for a couple of hours at the weekend. Russell’s daily Mum cuts my nails. my Mum and on Wednesday to the routine is highly > I have a plaster on whenever possible Youth Club. Russell receives short-term care at a local structured, because I love having them on my fingers. autism-specialist service, where he feels very which has > For breakfast, I have cheese on toast or settled. During term time, he attends a youth club helped him to porridge, made by Mum. every Wednesday at the local special school. feel more Otherwise, he relies entirely on his family to secure and 7.40am provide his leisure activity. reduce his > I get my bag and coat and get on the difficult bus to school. Russell leaves school in July but no post- behaviours. Russell is 20 and needs support with school provision has been planned for him. Naturally, 12 noon most of his day-to-day living skills. His mother has taken him to visit two autism- his family is > Dinnertime. His family is currently battling to specific adult day services, one of which he concerned ensure he has appropriate support once seemed comfortable in. He has been offered a about the 3.15pm place there from September, but it is a one-hour problems they > I finish school and come home by he leaves school. Russell has an drive from home. The local authority panel face in trying to school bus. obsession with cats and he is using this considering his application has discussed it three maintain this interest to help him learn new words times in the last nine months, but has not yet degree of 4pm agreed to fund his transport. predictability as an > As soon as I get home, I put on my and improve his communication skills. adult. His Mum is shorts and T-shirt, then watch TV. I like considering drastically reducing her working Lilo and Stitch. hours in order to > I look at picture books of cats, lions, support him. tigers, cheetahs and leopards. 20 21 Patricia

Where does your family live? What programmes do you watch? How much of your time do you spend on Do you think that they understand that? My family is in Kent. I watch ‘Eastenders’ sometimes, and ‘Coronation your own? Sometimes – but not everybody knows how I Street’... sometimes the news or the weather... A lot of time and mostly most of the time. Yes... I feel. Not all the staff know how I feel unless I tell And do you get to see them? and the sport. I like to keep up with what’s going like watching films. them. If I tell them how I feel then Once a year. on in the world and all the current affairs. they’ll understand. Do you like to follow the story of films? Would you like to see them more often? [Do] you go out on trips a lot? I just find it difficult following the story of the Yes. I haven’t been on many trips lately because the soaps. I find it difficult to catch up on things weather hasn’t been too nice… but I’d like to do like the television or the radio. And tell me how you came to be in that one day. Middlesbrough. Do you find that sometimes the expression Oh I don’t know. I’d never heard of the place... I Where would you like to go? on their face is difficult to understand? didn’t know anything about Middlesbrough, but... Somewhere not too far away. You see, I can’t Sometimes. Patricia is 50 and lives in a residential service afford to go anywhere because I haven’t got a lot What do you do in the evenings? of money. I used to have a lot of money at one Is that something that you’d like somebody where she is significantly younger than the I watch the television. time but I haven’t got quite so much now... I used to help with? other residents. She is very unsure about how to sign bank cheques but I don't do that I’d like that, yes. I think it would be a big step she came to live so far away from her family. anymore. When I first came here I used to go to and a big change in life, in my life to come. Neither her care manager nor the staff at the bank and sometimes I would draw money out After all, we only have one life of our and sometimes the staff would do it for me. own, don’t we? Cos I only have one life, her residential service know how she came to and that’s it. Middlesbrough and have little knowledge of her Do you feel that you have too much support or background and needs. She has very little not enough support? Have people ever treated you badly Not enough support – I’d like to have more. because you’re autistic? choice and control over her day-to-day life Sometimes, yes. and has become less independent as a result. I noticed when I came in that the other people She has little opportunity to go out and here at the moment are a lot older than you. You have said that other people are a bit Yes, that’s right. I’m still only quite young... of a problem because sometimes they get remains isolated for most of the time. I’m the youngest person here, yes. in your way. Sometimes they can do, yes. Is that difficult for you? It can be, yes. 22 23 David

Could you tell me what you do on weekdays What do you have in common? Where are you going? What do you do when you’re there? and at the weekend? We like bears, we like teddy bears... erm, we like Every July [there’s] a special holiday programme I help take the stock out of the tubs and then I take Yes, of course, yes, of course – that’s no certain names, especially one in particular – for young people from the ages of sixteen until them out of the plastic packaging and then they problem. Mondays and Tuesdays I work in [a ‘Frances’. She likes the name Frances and I do the ages of twenty five... they do many various get tagged and then they get hung up and placed clothes shop] from eight o’clock until twelve and I as well. things [and] I’m doing entertainment this year. on a rail. They have these special cubes placed on work [there] on Wednesdays as well but from This year’s theme for entertainment is ‘Halloween’ the hooks of the hangers saying what size they nine until one. On Thursdays and Fridays I go to Could you tell me about any kind of help that you and I’m playing a role as the Skeleton King. are... not that they haven’t got a label inside saying [a voluntary organisation]. I do the ICT need? Do you need help with cooking, choosing the size anyway!... and then the rail gets taken up department down there – I’m a student in ICT. As clothes, personal care or anything like that? What have you done to prepare for [that]? to the customer lift and up to the sales floor. for what I do on a weekend, well, there’s no Ah, well I’m very good at picking my own Right, well I’ve made a handmade crown. All I have actual routine... I basically just do whatever I clothes now and buying them and knowing to do is paint it but I can do that down there and Is there anything you would like to do instead? want on a weekend. when I need them... I bought a new pair of I’ve already got a nice cloak... I bought it in the joke Well I had hoped to get a place in administration, white socks the other day because I’ve got my shop in town last year cos I had a Halloween party but unfortunately they were unable to offer me Do you like having that freedom at the weekend holiday coming up next week. coming up. But that wasn’t the only reason why I any places, any training, any work experience... to choose what you’re going to do? Or do you purchased that cloak. I intend to use that cloak for find the lack of routine stressful? other purposes... Anyway, I made a staff out of a Erm, no, no… not at all. very long stick and the main part of the staff is made out of a pumpkin head that’s supposed to be Do you go out anywhere in the evenings? like a sweet box... and I’ve got some nice black There is a social group that I joined towards the trousers and I’ve got a nice t-shirt that would be David is 24 and lives with his parents end of last year... that social group meets once suitable for my Skeleton King costume... and of every fortnight, or at least it tries to meet once course I’ve got splendid sunglasses that will make in Wales. He is close to his family and every fortnight anyway. my eyes look like a skeleton. receives support from a number of different services. However, some of Can you say who you feel closest to and who I know that you work at [the clothes shop] for understands and supports you the most? two days a week. Could you say how you find the services he currently uses will not Well, there’s this friend of mine. He too is in my that employment? be available to him once he reaches [social] group... and, well, he and I have been the Right, well, [it] is OK. I seem to be doing a little 25. With some employment-related best of friends ever since college... and there is more than I was before... It’s good that I’m not support, David would be more likely to someone else I do feel quite close to… my doing the same thing and doing it all the way Auntie April… Auntie April and I have a few through the whole four hours… but it still does realise his ambition of a fulfilling job. things in common. get a little boring from time to time. 24 25 Sue

Could you tell me what diagnosis you’ve What have you been told about where you’re What has the psychiatrist suggested? Tell me about him. been given? going to go and when you’re going to go? Well he just thought I needed treatment because Well, I couldn’t get any help off the Welfare and I’ve been told I have ASD and cerebral palsy. I’ve been told about five thousand other people of my depression… They said he was gonna take the person I was having the baby with died… live like this… They try to make it normal. When me away to his clinic and I said he can’t, because [I was] nineteen. I had a lot of trouble with the And could you tell me about your flat? you get to normal they don’t have to do I won’t let him... and the welfare said they want authorities to be supported, so it was very How long have you been here? anything... and nobody likes people like me that me to be put away… They had this meeting on difficult for seventeen years. I’ve been here four years... I was evicted from wants to find solutions to their own difficulty… the same table. [my last place] because the welfare didn’t have That’s why I neglect myself; it’s why I don’t ask What happened to him then? anywhere for me to go and I refused to go to the for help. What came out of that meeting? Disastrous, disastrous to me, actually … mental hostel... so I made myself what they call Nothing. I couldn’t do it properly myself you see. ‘homeless’. So who comes here to give you support? Nobody. What would be a really helpful service from a professional? Nobody at all? Well, there’s a wall in the middle… and you’ve got I’ve got my friend but we’re coming to to get over or under… you’ve gotta have another breaking point because I’m getting older way of doing it... My dad taught me, if you can’t and tireder and the demands are getting go over, go under... but if you’ve got people that Sue is 58 and was diagnosed with autism in bigger... [I‘ve] had other circumstances that don’t have a clue… weren’t very good [too]. her late forties. She also has a diagnosis of So do you think the key is understanding? cerebral palsy and feels that she has had What was that? …It’s usually people with suits on that seem to to battle for the little support she has Well, my dad died, I had a fire… I felt like I was not realise… expiring, you know, and that’s how I got help... received throughout her life. Any services People who are supposed to be there to she has received have been inappropriate, How old were you when you were told help you? and haven't helped her build a social support that you had autism? That’s right. They’ve got all the PhDs but network. She feels isolated in her community It was nine years ago… and then they they haven’t got no experience... but the tried to put the bi-polar depression other people have got experience but they and is desperate for some support from on me so I had to have psychiatry haven’t got PhDs. people with knowledge of autism. on top of it . Is there anything else you want to say before we finish? 26 I’ve also had a little boy. 27 Gary

Gary is 24 and lives with his parents. He was Gary went to special schools as a child and his Gary is very dependent on his family for support diagnosed with autism at a young age. He is non- transition from there to adult services was and has limited self-help skills. verbal so his parents spoke to us about his day- generally well managed, although there were to-day life and their experiences of caring for him. limited options open to him. “In the morning we have to get Gary showered and dried… you can set some clothes in front of “Independently, [Gary has] very [few relationships “The only choice for him at the time was to go to him and he will put them on, but he needs some with anyone outside the family circle]. He is a day centre. He went through a process of going help with getting dressed. He is fond of food so Gary is 24 and lives at home with his part of our package, so if we get invited there for a few days before he finished school, [if he wants] something to eat he can get it out of somewhere or go somewhere then Gary and he was put into a group with a very good the cupboard… he will stir a saucepan with parents in Northern Ireland. He was comes with us. The only thing that Gary does team leader… she has been good at ensuring something that is being made for him. But diagnosed with autism as a child and separately from that is a thing called ‘Caring that he is kept active.” obviously there are limits to what he can do… was educated at special school. He Breaks’, where once a week he is taken out for he will do very simple tasks when he’s given four hours and they have a variety of activities… Gary also spends one day a week at a sheltered them and we do try to give him things to do. needs 24-hour support and attends a they go perhaps to the cinema, or ten-pin bowling, employment placement but has not had a very day centre and work placement but or go and play snooker.” positive experience of this so far. “The simple reality is that he needs relies on his parents for all other 24-hour supervision. He’s not safe to go out on support and leisure activities. “[Gary was] sent to a bottling plant which, the road by himself, so even getting him in and because he is strong and physically able, they out of the car we are always careful to make sure thought would be an environment where he he doesn’t go in the wrong direction. His self- would be able to work. Unfortunately, they found help is very, very limited. they had to have a higher level of supervision simply from a health and safety point of view. “Our needs and Gary’s needs are not the same. From our own perspective I guess we would like “Gary needed to be continually watched, as we a little more freedom… From Gary’s point of view do with him, so that nothing happened to him. we have always said that we would like to see For that reason they said that something else quality provision rather than a lot of provision... needed to be found and he is now doing We want, if we go away for a weekend, not to be something that he is not going to enjoy… he sits unhappy, knowing that he is stressed because he behind a desk and sticks stickers on envelopes. is in an inappropriate environment.” But at least it is a different environment from [the day centre]. That’s all I can say.”

28 29 About The National Autistic Society Acknowledgements

The National Autistic Society is the UK’s leading charity for people with autism Thank you to all of the adults with autism who First published 2009 by and their families. We provide advice, information, support and specialist shared their experiences with us and whose The National Autistic Society services to 100,000 people across the UK each year. Together with them, we interviews are used in this booklet. Thank you 393 City Road campaign for lasting, positive change for everyone affected by autism. also to Brenda Nally, Derek Shuter and Sandra London Thoms who conducted the in-depth interviews EC1V 1NG Our Autism Helpline provides impartial and confidential information and advice across the UK and to the NAS staff who helped to people with autism spectrum disorders and their families. Call the Helpline to produce this booklet, including Amanda www.autism.org.uk on 0845 070 4004, Mondays to Fridays, between 10am and 4pm. Batten, Sarah Best, Matthew Downie, Chris Lean, Kathryn Quinton, Mia Rosenblatt, Rhea Shortus, All rights reserved. No part of this book can be As we are dependent on voluntary donations, we need your support to Paul Wady and Paolo Zeppetelli. reproduced, stored in a retrievable system or continue to provide our services and develop their quality and scope. You can transmitted, in any form or by means electronic, help to make a difference to even more people living with autism. To find out All the extracts in this booklet are taken from mechanical, photocopying, recording or more, or make a donation, please call 0870 233 4040. in-depth interviews with adults from across the otherwise without prior permission of the autism spectrum, both male and female. People copyright owner. of all ages were interviewed across England, Campaigning for change Scotland and Wales in 2007 and in Northern © The National Autistic Society 2009 Ireland in 2008, as part of our research for the The National Autistic Society campaigns to transform the lives of people with I Exist campaign. This campaign was based on Design by wave.coop autism. We launched our I Exist campaign in 2008 to highlight the lack of the largest ever UK survey of adults with autism. Printed by Newnorth support and services for adults with autism. Our research revealed that many All the interviews included in this document adults with autism are unable to access the support and services they need to represent the circumstances of the individuals at help them fulfil their potential. I Exist calls for national and local leadership to the time when the interviews were conducted ensure that the needs of adults with autism are adequately met. To achieve and are presented in their own words where this, accurate prevalence figures should be collated and kept both nationally possible. All views expressed are those of the and locally to aid the planning and delivery of services, and steps must be interviewee. taken to address the gaps in service provision, which particularly affect people with Asperger syndrome or high-functioning autism.

For further information about our current campaigns and to find out how you can get involved, visit www.think-differently.org.uk/campaign

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