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My sister has Fragile X syndrome. The barriers to an ordinary life are institutional

What makes an “ordinary life” for the UK’s 1.5 million learning disabled people? Having relationships, choosing where to live or when to go out? Things that most of us take for granted are often denied to people like my sister Raana, who has Fragile X syndrome, the most common inherited cause of learning disability.

With the right support and an enlightened attitude that’s mindful of people’s human rights, people with learning disabilities and autism can enjoy the things most of us take for granted. I wrote an opinion piece about this for the Guardian.

The article also describes the short film Raana made for a recent conference run by charity Stay Up Late, a ground breaking event where everyone who spoke had a learning disability or autism, and most of the 130-strong audience worked in social care.  My sister’s film shows what she can do when she has the right support, sometging that will also be reflected in my forthcoming book, Made Possible.

As Andrew Walker from Stay Up Late’s quality checking team says: “We’re the experts. We’re the people who want to live a life … we’re no different from anyone else. We should be treated the same.”

Snooker, skiing and smuggling in cider – lessons from a long-stay hospital

A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.

Guest post by Joe Peacock, heritage project coordinator, CASBA

Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.

Roland spent almost 15 years in institutional care.

Former Monyhull Hosptial resident Roland Clewley today

Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”

This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”

Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.

He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.

“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”

He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”

He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.

He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.

Roland Clewley winning a snooker competition (photo: CASBA)

Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”

Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.

In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.

Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.

The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.

• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here

The Social Issue – on a summer break

As the Twitter screenshot above says, I’m on a break from blogging and tweeting so I can progress the book, Made Possible, a collection of essays on success by high achieving people with learning disabilities (yes, you read that right – this book’s all about shattering stereotypes!).

You can find out more about this crowdfunded collection of essays here which is being published thanks to some incredible support from its patrons (a list of supporters so far is available on this page if you scroll down to ‘supporters’).

New report demands more support for vulnerable children

Families at a Spurgeons’ children’s centre, Aylesbury, Buckinghamshire (photo: Bronac McNeill)
Guest post by Ross Hendry, chief executive of Spurgeons Children’s Charity

New research, which we launch today, paints a picture of far too many young families struggling.

Parents with children under the age of 18 are increasingly anxious, according to Spurgeons’ Parent Report, and many feel that there is little support available.

The research shows half of parents worry their children have low self-esteem or are unhappy (46%) or are being bullied (46%)*; whilst 42% of parents think there is little to no support available from statutory, community or voluntary services to help with family challenges.

And it is many of the most vulnerable who are struggling the most. The ones who cannot or do not have a strong, stable and supportive network of family and friends to turn to. These are the families we work with, day in, day out – their children are among the 4 million living in poverty in the UK today. They are the families for whom support seems very distant and hard to attain just when their needs seem to be increasing.

What’s important is that families get the support they need when they need it. And that’s where charities like ours come in. Spurgeons Children’s Charity is driven by its mission to improve the lives of families and children who are struggling to cope; and to see every child given the chance of a hope filled future.

It is 150 years since we were first founded, but we still work at the heart of communities to improve the life chances of some of the most vulnerable children and families in England. Our focus is supporting families who struggle to support themselves through intervention and help that centres on the child.

The reality is, despite the immense wealth and opportunities for social mobility, life for some families is as tough today as it was when we were first established. Inequality today may look different; we may know more about causes and solutions; we may spend more time talking and writing about it; but it is still an enduring social and economic scar on our society.

We offer a range of different services across the country. For example, our 23 children’s centres support parents with young children to access the help they need, ensuring poverty and deprivation don’t become barriers to a better future. We work with local partners in communities with high levels of deprivation across the UK, supporting parents and their children from pre-natal stage up to the age of five.

When parents need to develop new strategies for dealing with issues; or they feel they maybe aren’t coping as well as they could, our support worker teams are there. Sometimes just to listen; but often to provide practical support and advice too. There are a range of parenting courses; opportunities to stay and play and a chance to meet and talk with other parents.

The chance to access peer to peer support can be invaluable and a life line for many parents who often feel alone. This is true for both mums and dads and we’re keen to recognise the important roles fathers play in their children’s lives. Our Saturdads project, which started in 2009 and worked with 89 dads last year alone, helps fathers develop stronger, positive relationships; build peer support networks; and generally build their confidence as a parent. Too often public funded services are portrayed as places of dependency when the reality is a timely intervention can be the route to flourishing, maturity and development for parents and children.

Spurgeons works to support families (photo: Bronac McNeill)

The Parent Report we publish today gives us an opportunity to compare the views of the wider parent population to our own insight. From parent feedback at our services, through to safeguarding reporting, we are able to draw out comparisons and identity some common themes. What we do know from the work taking place is that it’s not always easy for families to reach out.

All too often, parents are afraid to engage. For whatever reason, whether its concern over how they will be perceived, or feeling like they have somehow failed, we’re often the last place they turn. It’s not uncommon for us to be told by parents that they wished they’d reached out sooner. But the question we need to ask is ‘why aren’t they?’

We need our services, and those offered by others like us – from government, charities, schools and GPs – to be recognised as the safe and reassuring places we believe them to be. Where parents can take their children and be free from judgement at a time in their life when they need it most.

It’s only fair that we all accept some responsibility with this – if parents don’t feel that they can access the support available, what can we do differently to help them on their way? More awareness maybe; more accessibility for the isolated and hard to reach groups most definitely; but maybe it’s more than that.

In a world where they are so many expectations and pressures, living up to a perfect ideal can make a tough job even harder. From our part, we want to ensure there is always someone there to support families – especially those in greatest need – with good information, advice and meaningful support.

About the research
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1,842 GB parents with children under 18 years of age. Fieldwork was undertaken between 21st – 27 April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).
* When asked about the three issues they are most concerned about for their children, either now or in the future.

People power can transform communities – we need more of it

Guest post by Tracy Fishwick, chief executive of Transform Lives

Leeds Community Homes is striving for a people-powered community housing revolution, placing the new organisation at the cutting edge of housing practice.

The not-for-profit group has raised £360,000 to invest in 16 permanently affordable homes through community shares (a type of share capital called ‘withdrawable shares’ issued by co-operatives or community benefit societies). With the first tenants due to move in by next April, the organisation’s #peoplepoweredhomes campaign is an innovative way to create housing developed by local people, to meet the housing needs of local people. The project wants to create 1,000 affordable homes over the next decade.

People-focused housing solutions are at the heart of the People’s Powerhouse event taking place next month. The housing group’s work in Leeds is the kind of positive story of local change that we hope will inspire delegates to recreate similar projects in their own communities. More good practice like this is vital at a time of chronic housing shortage, with housebuilding falling almost 100,000 homes per year short of achieving the government’s ambition.

You may have read about the People’s Powerhouse which was launched in February and originally billed in the press as “a rival ‘northern powerhouse’ conference to one that advertised 15 male speakers but no women and just 13 of all 98 listed speakers were women”.

Leeds Community Homes, Plus Dane Housing and my own company, Transform Lives, are just some of the organisations taking part. We hope the People’s Powerhouse will help create a dialogue about inclusive, good growth, and its potential to transform communities and lives across the North of England.

Other work worth replicating includes Give Get Go, which Transform Lives collaborates on with a group of housing organisations. The initiative supports social housing tenants into work – connecting unemployed people to employers through volunteering and mentoring, growing skills and confidence and creating jobs. Key to the project’s success is bringing civic institutions and leaders together for the first time to work collaboratively in Liverpool, including the University of Liverpool, Everton FC and the National Trust.

We also work with Plus Dane Housing on its Waves of Hope Big Lottery programme, which aims to tackle homelessness and other complex barriers to work. In just two years, the project has supported 236 people, 83% of whom say their rough sleeping has been reduced. And 67% report a reduction in substance misuse. Both Plus Dane Housing and our other partner, the University of Liverpool, will be showcasing this work at the People’s Powerhouse, underlining the difference we can make when we find good ways of working collaboratively and locally.

Our hope is that we will build a long-term movement for change that supports good and inclusive growth in the North with a particular focus on how people are the key to growth. The aim is to include all sectors and sections of the community, harnessing the combined skills and leverage of the public sector, voluntary, community, civic leaders and business.

As Lord Victor Adebowale, chairman of Social Enterprise UK and chief executive of social enterprise Turning Point, says: “’People’s Powerhouse’ perfectly reflects our vision for economic investment in the North of England.” Social enterprises often find innovative solutions to social issues and as Lord Victor, a People’s Powerhouse keynote speaker, adds: “We cannot allow anyone to be left behind. Investment in the North must be inclusive and must be used to support communities as well as businesses, adding value to the lives of real people.”

* The People’s Powerhouse event takes place on Wednesday 12 July from 10am-4pm at Doncaster Rovers Football Ground. For more information and to register see the website. Discounts are available including for young people and for small enterprises and charities.

Social work: the next generation

Rashmi Becker, disability advocate and founder of inclusive dance project Step Change
A guest post by Rashmi Becker

Against a backdrop of funding cuts, headlines about poor practice and high staff turnover in the sector, it is easy to see how the personal aspect of ‘care’ can become lost. The increased focus on efficiencies, paperwork and risk avoidance can often shift the focus from people to process.

These were among the issues discussed when I recently spoke to BA and MA students at Coventry University as a visiting lecturer. I was interested in what expectations and views people preparing to enter the world of social work had of the sector, and what had motivated their choice of career.

I have spent two decades working for central government, social care providers and now, as a PhD researcher at the University of Cambridge examining what quality of life means to people with learning disabilities in residential care. An advocate for disability sport, I also recently co-founded an inclusive dance company that provides disabled and non-disabled people with the chance to learn in an inclusive environment. In addition, I am guardian to my older brother who has autism. So I started by asking the student-filled lecture theatre to indicate if they had a relative with a disability. Almost everyone raised their hand.

I was struck by the maturity, insight, and engagement of the students I met. They wanted to work in social care because they see themselves as caring. But already so early into their careers, many had met with challenges and wanted guidance and support but were not sure how to access this.

I spoke about the duty of every individual to take ownership of better practice, and not to allow poor practice to happen around them by saying nothing. A student approached me during the break. She said she had witnessed physical abuse in a care home during her placement but she was so junior she felt unable to do anything. I advised her of the regulatory authority and how to report abuse confidentially but there was wider concern among students that in a tight-knit environment where staff know each other well and there is a culture of solidarity, it would be difficult to report poor practice without being identified and singled-out. There was an echo of support for one student’s view that one can feel disempowered to make a difference when the scale of the challenge seems so vast or as she put it: ‘what difference can I make when the system is so broken’.

Hearing comments like this, I was heartened by the students’ willingness to self-reflect on how they can make a personal impact on people’s lives in spite of the wider challenges. We discussed what quality of life and identity means for people with disabilities. I shared case studies of support workers and how they had enabled people to achieve their potential by making efforts to engage on a personal, individual level and thinking about what someone can do not what they can’t.

I spoke about my work around inclusive dance through Step Change Studios, which provides disabled and non-disabled people with the chance to learn in an inclusive environment, and the feedback from disabled people on what being active and participating in society on an equal platform means to them. I was really pleased to receive feedback which showed that students understood that inclusion was not simply about taking part in an activity but goes much deeper. As one student said: ‘The description of the woman with a disability who said as a dancer she could feel like a beautiful woman was powerful and made me realise that people with disabilities often don’t ever get to see themselves in this way’.

As another student commented after the lecture: ‘I was really struck by the way Rashmi spoke about social work becoming ‘transactional’ – this is my experience of how a lot of learning disabilities services are. Relationships happen, but the emphasis that managers have is ticking boxes.’

The students also asked for advice on how to cope with challenging situations and people, I reflected on what I have learned during difficult times: identify good people who can inspire you and don’t be distracted by negative people; focus on potential not obstacles; making a small difference is better than doing nothing; and look after your wellbeing because you cannot be of value to someone else if you do not value yourself.

* Rashmi Becker’s Step Change Studios is holding a ‘Strictly’ style competition at Stratford Circus, East London, today (Monday 24th April) with care provider East Thames involving people with learning disabilities. The event is being held in advance of the UNESCO International Day of Dance next Saturday, 29 April. Contact Step Change for more information.

* A previous post on wheelchair dance can be read here.

The power of a poem: how reading broke David’s isolation

EleanorMcCann, TheReader project

Guest post by Eleanor McCann, The Reader project

Whenever I arrived to read with patients at the psychiatric hospital, David was always alone. I approached him a few times but the weeks went by and he seemed unreachable, saying nothing and making no eye contact. One evening, I came on to the ward to find him lying on a sofa with the lights off, his hood up and his earphones in. All the barriers were up. I handed him a poem and, to my amazement, he took his earphones out, his hood down and said: “Can you turn on the light?”

The poem I gave to David was Release, by R.S. Gwynn. It goes:

Slow for the sake of flowers as they turn
Toward sunlight, graceful as a line of sail
Coming into the wind. Slow for the mill-
Wheel’s heft and plummet, for the chug and churn
Of water as it gathers, for the frail
Half-life of spraylets as they toss and spill.

For all that lags and eases, all that shows
The winding-downward and diminished scale
Of days declining to a twilit chill,
Breathe quietly, release into repose:
Be still.

I think the poem’s stillness broke David’s silence. After that, he joined the reading group on his ward, where we enjoyed short stories, such as Saki’s The Lumber Room and Doris Lessing’s Through the Tunnel; extracts from novels including Jane Eyre and The Old Man and the Sea and poems old and new. We read Release with the group and David said he loved the last two lines, especially. He said: “Poems can move you even though you’re sat still. Probably you actually have to be still like it says there. It’s different from feeling manic.”

Weekly Get Into Reading groups bring people together to read aloud. Pic: The Reader project

David has instructed me to always approach him: “Come and knock on my door, even when I’m in the dark and I’ve got my back to you.” This is the essence of why the reading project exists: to knock on doors, bringing light and lightness through reading.

David’s group is one of about 280 Get Into Reading (GIR) groups across the UK. GIR brings people together through weekly read aloud groups, where people can choose to read and are invited to give personal responses. We have groups in locations such as care homes, libraries, prisons, mental health drop-in centres, community centres, schools, hostels, refugee centres and workplaces. Sessions are an opportunity for people of all ages, backgrounds and abilities to engage with reading for pleasure. The work aims to bring about, what we call, a Reading Revolution. This means we want to make literature available to those most in need in our society, as a way of fostering individual wellbeing and social cohesion.

Reading as part of a group can bring mental health benefits. Pic: The Reader project

I work specifically within mental health settings so my groups are in a variety of health-care environments: older people’s care homes; psychiatric units; secure hospitals and addictions services. This type of work is an innovation. The medical director of Mersey Care NHS Trust has said that “Get Into Reading is one of the biggest developments in mental health practice in the last 10 years.” We believe our model is a pioneering way of using creative partnership to deliver meaningful activity to patients. Reading should not be merely an additional intervention; I would identify it as an integral part of the care provision for mental health patients.

My grandmother was an occupational therapist in the 1960s and 70s, and she remembers reading aloud with some of the people with whom she came into contact. It’s just that we are only now really realising the full extent of the potential that literature has to help people- and that this can amount to the transformation of lives and communities.

We have recently carried out some evaluation so have statistics to substantiate this. 54 reading group attendees, both inpatients and outpatients, filled in a questionnaire. The results showed very encouraging responses to their experience of the reading groups.

There were some overwhelmingly positive results, for example, 94% of people agreed with the statement ‘The reading group has given me a chance to take part in interesting discussions’ – but the results form our research are particularly relevant in the context of mental health. In response to the statement “reading has improved my mood”, 78% agreed, 18% neither agreed nor disagreed and just 4% disagreed. And in reaction to the statement that “in the group I’m able to be myself”, 79% agreed, 19% neither agreed nor disagreed and just 2% disagreed. Our research showed 85% agreed with the comment “I’m more able to relax” while 11% neither agreed nor disagreed and 5% disagreed.

I find my work extremely rewarding, primarily because of qualitative, individualised stories like David’s, but this is verified by a growing evidence base, pointing to cost-effective, lasting benefits for our readers.

* Eleanor McCann is a project worker with Mersey Care Reads, a collaboration between The Reader Organisation and Mersey Care NHS Trust. The organisation was a runner-up in last year’s Guardian Public Service Award. Eleanor’s work involves delivering weekly reading groups in mental health settings across Merseyside. She is also studying for a masters in Reading in Practice, a course combining literature and health science, at the University of Liverpool and is co-editor of The Reader magazine. Eleanor can be contacted at eleanormccann@thereader.org.uk

Lessons in leadership: how to grow youth talent

Guest post by Alison Bradley, youth charity Mosaic
The world is changing rapidly for young people who have to learn to survive and perform in a competitive global environment. Now, more than ever, is the time for young people to take the lead in developing themselves and in having a positive impact on the individuals and communities around them.

The question is, how?

Despite their best attempts, with the current economic climate, a growing number of young people in the UK and abroad face unemployment. In addition, in the last year we have seen the disenchantment of young people culminate in large scale events, both in the UK riots in the summer, and in the ongoing protests for regime change across the Middle East.

I work for Mosaic, a charitable initiative of HRH The Prince of Wales, creating opportunities for young people of every background. We aim to have a positive effect on confidence, employability and self efficacy. By showing young people what inspirational leadership looks like, introducing them to role models who they can relate to, and persuading them that they too can be leaders who make a positive impact on the people around them – we aim to turn frustration and inertia into action and responsibility.

A Mosaic secondary school mentoring session

We have found some key factors to encouraging young people to discover their leadership skills. First is the definition of what is successful and inspiring leadership. For many young people, they do not consider themselves leadership material because they are not famous enough or wealthy enough or old enough.

However, through examining the character traits of effective leaders, using real life examples, we identify that the skills of a good leader are those which can be trained and developed – they are not simply based on an individual’s position or celebrity or charisma but instead are focused on serving others and behaving responsibly and consistently. A good example is that of listening skills. Every leader needs to demonstrate that they can fully attend to a colleague’s concerns, reflecting back on what they have heard, and asking clarifying questions to help reach a solution. This is a skill which can be taught and honed amongst young people.

Mosaic runs mentoring programmes for primary schools

Second is the recognition of personal emotional resilience. It is critical to understand that all leaders face difficulties on a daily basis, and that the ability to navigate these with a positive outlook and bounce back from disappointments, brings strength rather than demonstrates failure. We ask young people to recall a time when they have felt particularly under pressure, and to consider how they endured this and who supported them. This has as much relevance for school aged students as it does for those in the work environment, and is certainly a skill that can be developed.

Third, and related to resilience, is the need for leaders to have a network in which they can share resources, continue learning and be open to feedback. The Mosaic International Summit, our international leadership development programme is a great example of this; by bringing together leaders from different backgrounds and perspectives, invaluable exchange of ideas takes place and also, many cross cultural stereotypes and fears are shattered. As one of our alumni said, “there is no source of inspiration greater than a person who has been in the same place you are, yet has surmounted the odds. “

* Alison Bradley is the international director at Mosaic, a charitable initiative of HRH The Prince of Wales. She oversees the leadership development programme, which aims to grow leadership ability in young people and equip them to be a positive part of their communities. Alison has previously worked in a number of organisations which support young people, in the UK and abroad.

“Information about autism is better coming from someone who is autistic”

Simon after winning his award for public speaking on autism from learning disability charity Dimensions

By Simon Smith

My mum and dad realised something was different about me when I was about two to three-years-old, because I played differently to other children. I didn’t engage and interact with others. I didn’t cuddle or give eye contact. I had difficulties with speech and hated change.

I started realising from the age of 14-15 that people were treating me differently and this is when I first realised that I was different. At first I felt kind of annoyed about and wondered why I was getting all the attention. I then asked my mother what was going on with me. She told me I was different to the other kids. First of all she told me all the good things about me; such as my brilliant memory and amazing empathy with animals. She also explained why I was having difficulties in certain areas such as making friends and interacting .

I was diagnosed when I was five. I went to a mainstream school with a statement of special educational needs. At school had I one-to-one support, speech and language therapy. I also attended a behaviour unit and later on had support from the Autistic Spectrum Condition Support Services which came into my school to give advice and support.

Being autistic means I am someone who feels and sees the world in more detail then people without autism. I have heightened senses such as sight, taste, touch ,smell and hearing . This means that I can find things incredibly annoying that wouldn’t bother other people or in some cases it means that I find things more interesting.

Looking back, it was when I started school things became a huge challenge. People often thought I was a trouble-maker (mostly the teachers due to their lack of understanding of my autism and my behaviours). Other students often found me very strange and in some cases would be cruel; bullying me because I was different. Being treated badly by people who didn’t understand me made me very negative about my ambitions and myself which still affects me today. The other thing that makes me different is my obsessions, but I’ve used to help guide me through tough times and they have also created opportunities and brought me success, like the award.

At the moment I have no support except from my parents because the local authority says I don’t meet the criteria.

At the end of last year, I won an Erica Award from learning disability support organisation Dimensions for the talks I do about autism. The annual awards celebrate people with autism who help others. It’s nice to feel appreciated for the hard work I do. I’m very honoured by it and I still can’t believe I won it.

Simon, who loves animals, at home with Rona, the family's dog

My talks came about when my mum was working with pre-school children with autism so when one day she asked for some advice on how to support a child, it made me think back to when I was a child of the same age. I looked back on what made things hard for me and told my mum what it was like from my perceptive. I told mum what it was like for me being autistic and how it affected my everyday life.

My mum said she learnt so much more about autism from me that day that she thought it would be really helpful for other parents. She arranged for me to do a talk to the parents of other children like me.

My talks cover a lot of areas including sensory issues, how my brain works, how I learn to communicate and socialise, my repetition,imitation, obsessions and my behaviour issues. I also offer general advice and strategies to help support people and the opportunity to ask questions. I give out evaluation sheets so people can comment on my talk if they want me to add or change anything.

The feedback is amazing. One parent has written: “I got home yesterday and saw my son from a completely different perspective, thanks to your insight and inside knowledge of autism” and a professional commented: “Simon’s talk was super every trainee teacher/nursery/pre-school worker in the country should meet Simon and hear his experiences. I learnt more in one hour about autism that 20 years as a teacher have ever done. I feel very uplifted and look forward to sharing/reflecting to my colleagues.”

I feel happy that I am going to try and give advice which might help people that I’m talking too. Afterwards I feel mentally tired as it takes a lot out of me and I need feedback from people because I find it hard to tell how well I’ve done.

The feedback from my first talk made me want to help more parents, so my mum asked Amaze – an advice service for parents of children with special needs – if they could help. Through Amaze I did a talk to 27 parents. These parents requested that I spoke to the professionals that they have to deal with because they felt that they were often not listened to. So my mum arranged for me to do talks for professionals such as respite services, PRESENS (Pre-School SEN Services) and two local special schools. I do talks for professional services and parent support groups and have done two workshops at a conference.

It makes me feel uplifted to know how much people appreciate my talks, to be told how much of a difference I am making in helping them to understand more about autism from a personal perspective and this encourages me to do more. I believe that information about autism is better when it comes from someone who is autistic.

My plan is to do more talks and to encourage other people with autism to do them with me and to continue my mentoring. My biggest aim would be to form a group of people with autism who would be confident to be able to attend any meeting regarding anything that might affect people who have autism because I feel it’s very important to have individuals with the problems to speak out and have a voice.

I would like to make councils and governments have someone with the learning disabilities or someone with autism actually on board, attending meetings and giving their own personal input which I think we can all benefit from. If I could get the government to do one thing it would be to consult more with the people that experience the conditions that they are making policies about to get their points of view.

* Simon Smith, 23, from Brighton, won the 2011 Erica Award because of his outstanding contribution to helping others understand what it is like to experience autism.