Our members come from all walks of life and are active in every corner of the country. Read some of their stories and find out why membership means so much to them.
Debra has four children, including Leo, who has autism.
My son Leo was never your ‘normal’ baby. From birth he had terrible problems with feeding, and at 12 months the health visitor referred him to a paediatrician because he was just so sick.
I’d previously worked with children and young adults with autism, and there were lots of little things that made me suspect that Leo had autism too. He was very withdrawn, did not like being held or comforted, and didn’t really play with toys - but did like them kept in the same place. He was eventually diagnosed with autism aged three.
Leo is now at a mainstream school. He masks a lot of his problems quite well, so the average person in the street might not think there is anything wrong with him (unless he is flapping). In this respect, having an official diagnosis has been really helpful – health professionals have explained his needs to teaching staff, how he masks things and what behaviour they should watch out for.
At school, Leo gets Action Plan Plus, which means he receives 10 hours of one-to-one support a week. Although this has benefited Leo, we’re fighting for him to get statemented as he really needs more support. His writing and reading has fallen behind his peers and without somebody to sit with him at school he finds it difficult to focus - so struggles to achieve in the timeframe he is given.
What advice would I give to parents whose children have been newly diagnosed with autism? Knowing that people are in the same position as you is a real psychological benefit, so meet other parents affected - listen to their experiences and how they have dealt with tricky issues.
Read books on autism, but don’t take everything you read as gospel. Join some online autism groups if you can. Having somewhere to say ‘I’m having a bad day’ - and for somebody to respond saying they’ve gone through the same thing, makes that bad day not so bad.
In a nutshell: interact with other people who are affected by autism, even if it’s only online or by phone. Listen to what everybody’s got to say - pick out what you think is best for your child, and fight for what you think is right.
Jackie's son Matthew has a multiple diagnosis that includes autism
"Matthew didn't speak or walk for the first four years of his life, and he didn't like to be held or touched. He wouldn't look at you and we always had to be in front of him to let him know we were talking to him. He liked lying on the floor playing with his cars (or rather, lining them up) and would only play with toys that had music and lights. As he loved coloured lights, our house became Santa’s grotto all year round."
When Matthew was diagnosed with autism, the family were relieved to know what his condition was and began to look for ways in which they could support him. Jackie became an NAS member in 2006 and, aided by our programmehelp!, she began to meet other parents whose children were also affected autism.
Matthew's educational needs have always been one of the family’s biggest challenges.
"Initially when Matthew attended school we had lots of services in place, such as speech and language therapy, physiotherapy and occupational therapy, but gradually over the years we have lost these services."
Jackie has often found a lack of understanding in the mainstream school system, recalling in particular an occasion when Matthew was so upset by his teacher telling him he was different that he spent over three hours under the dining room table repeating the words 'I’ve got to be the same as everyone else'.
"This incident stays firmly in my mind" says Jackie.
The family decided a change of school would be in Matthew’s best interests. "It would take a few pages to explain the problems we had with that" reflects Jackie - but the family did eventually manage to find somewhere which better accommodated Matthew’s needs, and he soon became much more settled.
It was around this time that Jackie herself began to consider the ways in which she could further help Matthew and improve her own confidence when speaking with professionals about the issues her family was facing. She began studying autism by attending our TEACCH course and "numerous lectures and seminars later" she completed a University Certificate in autism spectrum disorders. She is currently studying for her Postgraduate Diploma in Autism.
Jackie has found that studying autism has helped her to become more confident as a mum working alongside professionals; in some cases informing them of how best to support her son. Jackie hopes to finish her course this year and aspires to work with other parents of children with autism.
"By being a parent with these qualifications I feel that I can relate to other parents, to help them find their own skills and enable them to become more confident in supporting their own child."
Alongside her continuing studies, Jackie is currently negotiating the hurdles of Matthew’s transition to secondary school education. She remains optimistic about the future but is keenly aware of the challenges that still lay ahead.
John is in the British Army and has a son with autism.
"This was a massive shock to us and Sue and I tackled the challenge in different ways," says John. Sue, a special needs teacher, stopped work to support Andrew with a period of several years of intensive work that led to language. At the same time she changed her teaching focus from visual impairment to autism.
John wanted to change things in a different way - by joining the NAS Council of Members in 2003 and the Berkshire Autistic Society committee. He then went on to set up an NAS branch in West Berkshire in order to focus on people with autism in that area.
One of the coincidental outcomes of this activity was that the NAS West Berkshire branch persuaded the local authority to establish autism resource bases in two mainstream schools; Sue was hired to set up and run the primary one!
John feels that the NAS council is important, particularly in identifying suitable trustees and providing the Board and senior management with feedback and advice. However, in 2006 John was also elected to the Board as a Trustee, where he still serves.
"I remain impressed at the sheer spirit and desire of all those on council to make a difference. We need a real mix of skills, particularly to ensure that we can elect a strong, knowledgeable and effective Board of Trustees, and I would urge members to consider council as a means of helping the NAS affect change. And if not council – well why not gang together and help run or set up a branch if there isn't one in your area."
As for John’s son, Andrew, he has achieved a massive amount. He attends a mainstream secondary school with full-time support, although John feels that the school "just does not get it" and "so the fight continues." The NAS West Berkshire branch runs an excellent youth club, the Spectrum Club, and a range of activities that Andrew, as well as many others locally, benefit from. John and Sue's 14-year-old daughter Lauren fundraises for the branch and has climbed Ben Nevis, Sca Fell and Snowdon within a single 24-hour period to raise funds.
Kath's adult son, Andrew, has Asperger syndrome.
Kath Ellis is a primary school special support assistant. She lives in Bury with her husband Alan and son Andrew, who has Asperger syndrome.
My adult son Andrew was only diagnosed with Asperger syndrome in 2009. I first suspected he had autism when he was six months old, but my doctor dismissed my concerns because I had a qualification in special needs and he thought I was unduly focused on it - he told me to go away and think about something else.
Andrew went through school without any one-to-one help. When he left college, his whole life fell apart, because he just couldn't hold down a job. He was stealing from the house and was referred to a psychiatrist. By now, I was convinced his behaviour traits indicated he had an ASD.
At this time, we discovered the NAS through the internet. We phoned the NAS Autism Helpline, which gave us advice on what to say to our GP. Before long, Andrew was referred to a specialist in Sheffield, and finally received an Asperger diagnosis.
Since his diagnosis, Andrew's life has changed dramatically. We're very lucky where we live, because the NAS and Bury council have launched a ground-breaking brokerage service, which gives information and advice to people with autism who have an individual budget, to enable them to manage their own support.
Andrew's NAS service broker, Sara, is fantastic - we wouldn't have known how to spend his budget without her help. We've experienced various difficulties when encountering social workers that are not trained in autism, but Sara has been there to articulate our needs for us. She has been an absolute rock.
Because Andrew has gone from being sat at home doing absolutely nothing, to learning to ski and getting a laptop, Sara thought it would be good to make a DVD of his progress post-diagnosis. With lots of councils moving onto self-directed support, Andrew and Sara have been screening the DVD at NAS conferences and doing Q&As, to educate people about the changes to the social care system.
It's not just Andrew's life that has changed, however. Since joining the NAS, my husband and I don't feel so isolated anymore. We've got a support network now - even when we're not using it, it's so reassuring to know that we can always pick up the phone and speak to somebody who has the experience and knowledge to help us. We also love the members-only magazine, where people going through similar experiences can share ideas and tips. It's just a brilliant way of keeping everyone connected.
I love reading about other people's experiences of autism - it's always helpful to learn how somebody else has coped in a similar situation to you. That's why I - as the parent of an older person with autism - get involved where I can. If somebody who has a child with autism can benefit from something we've done over the years, then it's been worth sharing that information.
Andrew goes to a centre for people with autism in Greater Manchester, and my husband and I attend a local group for parents of people with autism. However, in our particular town - Ramsbottom - we don't know anybody who is in the same position as us. That's why being a part of the NAS is so great - we don't feel alone any more. We might be the only ones like this in Ramsbottom, but we only have to read the members' magazine to realise that there are lots of other people in the country who understand what we are going through.
The NAS is in partnership with Remploy in Manchester, and through them Andrew has just started supported employment. Following a three-week work trial, he was offered a part-time job working in data entry. Without Sara and the NAS's support, we don't know how we would have got him on the way.
Kirsty has autism and was on the BBC's 'The autistic me'.
Kirsty Seager was born in the East Midlands and was diagnosed with autism at the age of 14. Initially diagnosed with a speech delay at the age of four, Kirsty found life in a mainstream school difficult. "I didn’t have any friends" she says, "and I was constantly getting picked on".
After moving to the South West at the age of seven, Kirsty was referred to a special needs school. Although she initially found the move daunting, the consistent routine helped her to progress and her results began to improve.
Kirsty was diagnosed with dyspraxia at the age of nine, but continued to have difficulty with communication. It was only following professional assessment that she was eventually diagnosed with autism aged 14. Whilst Kirsty’s parents assure her that she was made aware of her autism at the time, she does not recall finding out until the age of 16, when she found a document on her computer in which it was mentioned.
Kirsty says herself that she "didn’t know much about autism", but coped with the diagnosis by extensively researching it on the internet. She found the NAS website in 2007, and the knowledge she acquired from reading through the pages lead her to become a member later that year. She immediately got involved with our work, selling raffle tickets to help raise money for the charity. She says: "I was so happy that I achieved something to help raise money to improve services for children and adults with an autism spectrum disorder."
Since then, Kirsty has continued to be actively involved in raising autism awareness and campaigning for improved services. She is an ambassador for the Council for Disabled Children, which recently launched a film called Young, Disabled and in Control, designed to challenge stereotypes of disability.
In 2009, Kirsty was contacted by a BBC production team through her website. They were looking for young people with autism aged 16-25 to take part in a television programme called The Autistic Me. "I was wary at first" explains Kirsty, "but after researching the company I decided to be involved in the documentary". In the final film, Kirsty meets Alex, a young man with Asperger syndrome, in a Brighton café. The story isn’t quite as it seems, says Kirsty. "Many people thought that we met on a dating site, but it was actually arranged by the TV crew".
Kirsty has many interests, and particularly enjoys music. Since 2010, she has been a member of Rock Choir, a contemporary choir with groups all over the UK.
Kirsty explains how much she enjoys going to rehearsals: "I get this buzz feeling when I’m singing in Rock Choir and the leader has a real sense of humour". In May 2011, Kirsty’s group joined others from all over the country to sing at Wembley Arena. The build-up to the event was filmed for the ITV documentary The Choir that Rocks. "It was a pretty emotional event," Kirsty recalls.
Kirsty is now writing her autobiography, A Day in the Life of an Autistic Girl, in which she talks about her own experience of growing up with autism. She is positive about the future, and hopes to move out of her home and gain more independence, whilst continuing to raise awareness of autism among the wider public.
Mike Stanton is an NAS Councillor and has a son with autism.
Although Mike is a teacher of children with special needs, he only recognised his son's autism in hindsight. Matthew had a statement of special education needs from the age of 3 because of his language delay, but after having surgery for ear infections and receiving speech therapy, he improved very rapidly and proved to be an incredibly sharp boy. Because he was so able, Matthew was not diagnosed with autism until the age of 12.
My son had learned to cope by observing other children and knew what to do to please everybody, but things went badly wrong when he was 10 as adolescence hit. That's when everything went pear-shaped.
My son was seeing a clinical psychologist at the time because of behavioural problems and I had just been on a teacher training course with Gary Mesibov from the University of North Carolina who had spent half a day basically describing my son in a talk about ASD. I suggested autism to his psychologist but she felt unqualified to give a diagnosis.
In fact, nobody in Cumbria was able to give a diagnosis at that time. But I had learned of Elliott House in Kent, a diagnostic service run by the NAS and Matthew's psychologist agreed to refer him. We travelled down to Kent to meet with Dougal Hare and Judith Gould who finally diagnosed him. My wife and I joined the NAS because it seemed the natural thing to do and helped to build a branch in Furness."
"The hardest thing about dealing with an ASD is people's reactions to autism. Professionals in education, as well as psychology have not given him the support he needed. School was an absolute disaster. He was bullied so badly that the whole family was affected.
Our car was vandalised, the house was pelted, he was essentially a prisoner in his own home. As a consequence, he developed OCD and suffers from depression from time to time. This made me angry and made me feel like a total failure. I had failed at protecting my family and this was depressing. I spent six months off work with clinical depression and took Prozac for two years.
My wife has been the rock of this family and she essentially saved our son by going out of her way to find things for him to do. When he was excluded from school she helped him get into nature and the outdoors. When he left school with no qualifications he studied countryside management at FE college.
This led to a degree in Countryside Management. He has managed to work on a fairly regular basis but it has always been temporary. His dream is to work for the National Trust full-time."
"The best piece of advice I have ever received was from Mike Fitzpatrick: 'Don’t just do something, stand there'. There is such a temptation to jump into situations and take drastic action but this won’t necessarily be the best move. Don’t be talked into chasing every cure or treatment that is fashionable now.
The first step is accepting who a person is, make the effort to step into their world and then look for ways to help them to join us in our world. Another good tip is to find other people in the same situation. I would recommend your local NAS branch or a support group."
Rick was diagnosed with Asperger syndrome aged 43.
Rick Veal was diagnosed with Asperger syndrome and dyspraxia at the late age of 43. Rick is now Deputy Manager of the Action service for the NAS.
Rick is currently writing a book about his experiences; from being taken into care from a young age, to being homeless for a number of years, his travels round America, and life as an adult with autism.
Rick was taken into care for the majority of his childhood, and he left school without any qualifications. He felt he always struggled with working and as a young man found it difficult to keep a job. He would often misunderstand the instructions, forget information, and found communication with other colleagues very difficult. His biggest goal was to get through the probationary period of work.
He became homeless aged 22 but still managed to find work as a night porter - he chose this job specifically because he found it easier working through the night as he didn't have to communicate with other colleagues, which was the thing he found most difficult.
Being homeless for Rick was the low-point of his life: "Being homeless as a person with autism is very difficult because you don't know where you are going to be from one moment to the next. I became obsessed with trying to live a normal life." He focused on sorting out the key problems he felt he had; he pushed himself purposefully into difficult situations.
He knew that communication was difficult for him, so he tried to engage in conversation where possible, knowing it would be a difficult and uncomfortable exchange.
Rick knew he had to do something to get himself out of his situation. He bought a plane ticket from a Virgin record shop and navigated his way round America moving from hostel to hostel, and staying with different people he met along the away, including living on a boat for a while.
Over the next seven months Rick got some casual work as a dish washer and showed his commitment by finishing quickly and making sure he secured himself more work. By putting in place strategies he found that little by little he could improve his successes in the work place. He realised after a while that he could do things, and being homeless for him was as bad as it was going to get.
On coming back to England, Rick got a flat on housing benefit and decided he wanted to go to University. With the help of his flatmate, who was a retired journalist, he taught himself how to write. He also attended a literacy and maths course.
"My dad helped me with some simple maths, subtraction, multiplication, etc. He told me later how surprised he was that I picked things up so quickly, but my problem never was that I wasn't intelligent; my problem was communication difficulties and memory issues."
Rick then passed his entry exam with Lambeth College and was on top of the world; this was a real turning point. He then went off to University of Westminster studying a degree in BSc Psychology. Rick was thrilled to have a place at university, but studying presented many problems; he has short-term memory problems, so retaining information was hard. He also got very easily distracted in lectures.
With exams, Rick had a variety of techniques from flash cards to mind maps. Rick found mind maps the most useful: "I would have to hope that I had the right information on the maps. But once it was implanted in my memory, it was there forever. Even now I can see those mind maps."
Rick came out of university with a fantastic 2.2 BSc degree.
"If I had known I'd had autism, I would have got a first class honours degree, as there would have been adjustments put in place."
University is also where Rick met his wife. He formed a special bond with her from the start, as he was able to communicate with her in a different way as she was deaf, so Rick learned sign language. Rick found social situations easier when she was there because other people made an effort to speak clearly so she could lip read, which helped him as well him.
Rick got tired of trying to read people's body language, and she got tired of lip reading, so when they were alone they both felt relaxed and could sign together peacefully, and worked well to communicate using this visual information.
Rick then got a job with Hackney Independent Living Team, where he was Senior Assistant for the mental health team; this was the start of his career. Although Rick didn't know about his Asperger syndrome, he felt a certain connection with people with autism.
"The funny thing is that I always seemed to end up working with people with autism, even though at that time many of them did not have a diagnosis."
Rick then went to work for the NHS in 1999, this was when he got married, and moved to Northwood, and had two children: Tristan in 2000 and Tamsyn in 2001.
"It was always my dream to have a normal family, so when I got married, got a house, had children, and had a job, I achieved my dream."
Rick soon discovered his children were showing effects of learning difficulties and his son, got diagnosed with Asperger syndrome and dyspraxia (the same as Rick) and his daughter is also showing signs of Asperger syndrome and ADHD. Rick has found huge difficulties with schools and services with there being insufficient provision.
Now Rick works for the NAS in a day centre in Acton which supports around 41 clients.
"Generally most of our clients have low functioning autism. We have to work a great deal with people's communication needs, flexibility of thought issues, etc."
Rick explained many of his clients have severe challenging behaviour issues but that he enjoys his job and works closely with his team on developing strategies, avoiding dangerous situations, and working on improving the quality of life of the client.
"Much of the work we do there is incredibly successful; we have a brilliant team of highly dedicated people who work together to transform the lives of those whom we are supporting. Such is our level of success... that we now have teams and other professionals from other parts of the country coming to visit us in the hope of emulating our achievements."
Due to a lot of encouragement and suggestion from friends and family, Rick decided to write his life story. Due to Rick's excellent long-term memory, this has been an interesting experience for him.
"My memory goes as far back as my crawling on the floor, and I have been able to relate in great detail the strange, traumatic and often funny journey that led to my diagnoses."
Rick has achieved a tremendous amount despite having an extremely difficult start to life, and as someone with autism, he has achieved a great deal, with outstanding dedication to improve his life for the better. We look forward to reading Rick's story and wish him every success for the future.
Sara was branch officer for our Surrey branch for 12 years; her son has autism.
After my son's diagnosis, I spent a couple of years not knowing anyone else who had a child with autism. Discovering my local NAS branch was wonderful - I received a tremendous amount of support and it was so helpful to meet other parents who understood what I was going through.
When I was elected Surrey branch officer in 1999, we had approximately 100 members. Twelve years later, we have nearly 1,000 members and organise support groups, activities for families, social events, speaker meetings and conferences, as well as campaigning on local issues.
To anyone thinking of setting up a branch, I would recommend that you start small and be realistic about what you can do in the spare time you have. Our membership sounds large, but covering a whole county means we have a large population from which to draw members. However, running a county-wide branch is a lot of work, and there's something to be said for keeping your branch to a more manageable size!
Try to get some publicity in your local paper or radio station, and use your NAS regional team - they are fantastic in the advice they can give. Branch network meetings are also a brilliant way to get ideas from other branch officers and find out what's worked for them.
We've got a good internet presence, a popular email support group, and have formed good links with local doctors, who tell new parents about us when they diagnose children.
Life has changed enormously since I got involved with the NAS - it's certainly got a lot busier! I've gone from knowing no parents in my situation, to having more friends who know first-hand what I'm going through than don't.
I've also learnt so much about autism myself, which has further helped me with my own son. Being able to help people where I can and doing a bit of campaigning has also been incredibly rewarding.
I would definitely recommend that parents in similar situations get involved in their local branch as a way of meeting other people who are affected by autism - nothing beats talking to another parent who really understands what you're going through. You can have great personal friends who will try their best to be supportive, but if they don't actually have a child with autism themselves, they can't really understand all the challenges you face.
There have been lots of highlights over the past decade, but I suppose one of the strong features of the Surrey branch is the conferences we've organised. In the early days of my involvement, I remember us discussing how wonderful it would be to get Tony Attwood to talk at a meeting, and realising that we would need much more time - and a much bigger venue - than we usually had.
This led to our first conference in 2001, when 300 people heard Tony speak for the whole day and didn't want him to stop!
Another highlight happened recently, when after years of us lobbying politicians about autism, my local MP (Minister for Public Health) contacted us because she wanted an update from local parents about services for children with ASDs.
Although I'm stepping down, I'm staying on the Surrey branch committee to focus on adult services - my son is now in his twenties, so that's an area which particularly interests me. I'm definitely staying involved, though - I couldn't and wouldn't want to leave the branch!