Great work by AAN Ambassador Akib in Birmingham

Akib Qadir from Birmingham has been getting involved with what's happening in his home city. Over the past few months he has met with Birmingham's autism lead and has been writing a report on his personal experiences of diagnosis and trying to access support
 

At their meeting this month the Birmingham Autism Partnership Board discussed his report and the recommendations for change that he proposed. They are going to use this to strengthen and improve the local strategy that they are now drafting. They have also invited Akib to play a leading role in the public consultation they will be carrying out on their local strategy in the new year.

Akib has also now approach by a member of the National Programme Board who is keen to hold a similar discussion on his report at a national level.

Commenting on his success with the Partnership Board, Akib said "It's really good to be involved in the heart of the decision making process as no decision about autism must be made with out us."

Scottish trade union support better employment opportunities for people with autism

Earlier this year, NAS campaigner David Nicholson had a very positive meeting with Terry Anderson from the Scottish Trade Union Congress. Here's what he had to say about it:

 

 

This summer, I was accompanied by Robert MacBean, the NAS Policy and Parliamentary Officer in Scotland, to a meeting with Terry Anderson from the Scottish Trade Union Congress (STUC) in Edinburgh.

The meeting came about after I did a dissertation on the issue of autism and employment. The research  looked at possible ways of how we could get more people with autism into employment and retain that employment. One of these ways was getting the trade union movement involved in helping get people with autism into the workplace. Therefore it was decided that meeting someone from the STUC would be the best way to seeing what, if anything, the trade union movement could do to help and if there were anything that they were doing presently which was helping people with autism get into work.

Terry was keen to listen to the points that Robert and myself put across on the issue under discussion. I emphasised the fact that only 15% of people with Autism were in any kind of employment, either full-time or part-time. I was also keen to stress to Terry that people with Autism often faced bullying within the workplace from fellow colleagues as well as the employers themselves. I stressed that this was down to a lack of awareness of the condition and that perhaps there could be a role for the trade unions in helping ensure that employers and employees were made aware of autism.

Terry understood my concern and highlighted that employees within the workplace could get support or assistance from the union if they were getting bullied by fellow workers or their bosses. If they weren’t in a union, then what happened was that they could phone up for assistance but this only lasted for a period of a year or so before that helped ceased. If the employee wanted to receive further help after that period then they had to join the relevant union for example Unite, GMB or Unison amongst others.

Terry also said that he was aware of the union helping a few people with autism out when it came to employment tribunal hearings but I was glad to hear that these were rare occurances and that often things were settled before they reached the tribunal stage

Terry made one point which really excited me that perhaps in order to ensure that the workplace becomes a more autism friendly place that employees with autism (who were in a union) could become union reps (shop stewards) so that they could then help fellow employees with autism but to also help make employees and employers understand autism more. I think this is an idea which has got potential and I would certainly give serious consideration to becoming a union rep if I were to find work.

 
Robert also informed Terry of the on-going campaign being run by the NAS entitled The Undiscovered Workforce and I hope that the STUC can play a role within that campaign. Before the meeting ended Terry stated that there was an STUC Disabled Workers Committee which also held an annual conference and he recommended that this was perhaps another channel that both Robert and myself could explore further.

Overall, it was a very positive meeting and I look forward, along with Robert, to having further dialogue with the STUC in the near future.

A day in the life of an APPO: Adventures in campaigning

North-based Area Policy and Participation Officer (APPO), Eleanor Thompson, shares a typical day in this new role. APPOs are the policy and campaigns team’s representatives based in each of the National Autistic Society’s areas in England – the South West, South East, Central and North. It’s their job to empower local people with autism to campaign, to support branches with policy and campaigns work and to enable all the rest of the NAS to feed back to the central team about the situation for people with autism and their families in local areas. We now have APPOs around the country - to find out who yours is get in touch with us at campaign@nas.org.uk.

I’m up nice and early today as I have a meeting in Cumbria at lunchtime. My patch is really quite large (from Yorkshire across the country and right up to the Scottish boarder) so my days can involve some quite long train journeys!

After panicking, as ever, that I’m going to be late, I arrive at the station half an hour early, buy my tickets and settle down on the platform. I’ve brought plenty of things to keep me occupied so once I get on the train I start contacting some of the ambassadors I’ve been working with. Ambassadors are members of the Autism Action Network who have signed up to be advocates on behalf of the charity and to carry out a certain number of press, campaigns, or policy actions across the year. In return, we provide them with support for their projects when it’s needed. Work with ambassadors can be really varied. Some ambassadors have local projects or individual campaigns they are working on, while others are taking on the challenge of joining in with our national campaigns in their local area. Today I interview an ambassador for the blog about why she wants to get involved with the Undiscovered Workforce campaign. We’re always trying to think of new ways to encourage more people to take actions, and we really like to celebrate the achievements of our campaigners and media spokespeople. Do feel free to get in touch if you want to be featured on the blog.

Later, I turn to the results of a survey we’ve been running in conjunction with the Cheshire West and Chester branch. This survey is designed to feed back to the Local Authority on the experience of people with autism and their families living in Cheshire West and Chester. We got 111 responses to the survey, we were featured in a number of local newspapers, and even on the local radio. Now it’s up to me to pull the results into a sensible document, and then I will pass it onto the branch officer and we’ll talk about the next steps for the campaign and how we are going to present our findings to the Local Authority.

After a journey through incredibly beautiful countryside I arrive in Penrith where I meet up with Sara from the National Autistic Society’s North Area Development Team. We head over to the meeting together. It’s held in a café in this amazing community resource they have in Penrith called The Rheged Centre, which is apparently Europe’s largest grass covered building. Sara and I are hoping to work with Family Support workers in Cumbria to establish a local network specifically for campaigning. Because of the geography of the area, it can be hard for people with autism and their families to get together, and they often find it difficult to know how to input into the decisions that are being made by the Local Authority regarding services and support for people on the spectrum. I’ve drafted up some plans for how the network could work, and present it to the Cumbria Family Support Workers. They seem positive, so all that’s left now is for us to organise a venue and invite the attendees. If you’re Cumbria-based and want to find out more, do get in touch with me at eleanor.thompson@nas.org.uk.

Next I head over to Sunderland, to meet up with Charlie who runs a social group for local people with autism. She’s interested in getting some campaigning going with the group and today’s their annual summer barbeque so I’m going to go and meet them and see whether they have anything they want to campaign about. This is part of a wider move within the National Autistic Society to make sure that people using our services have access to campaigning, both nationally and in their local area. Chatting with the group members, it seems there are lots of issues that concern them, including employment, and while not everyone is interested in campaigning, there is a number of people who want to get involved. I make plans to come back to their next meeting and work with them on an action plan.

I hope this article has given you some idea of what we do as an APPO – as you can tell, it’s pretty varied and no two days are the same. If you have a local campaigning idea contact campaign@nas.org.uk who can put you in touch with the right person.

Hard work behind the scenes

I've taken part in the Undiscovered Workforce campaign by emailing my MP and local Councillors. I've also signed the petition about tick box benefits, completed the benefits survey and am currently working with Nadine Honeybone (The Autism Directory founder) to make Plymouth an Autism Friendly city. So far I've received interest from Plymouth City Bus who would like to sign up as a local business who would like Autism Friendly accreditation.

I am also helping Scott James (X Factor 2009) to raise £3000 to journey to Canada for an international autism festival where he has been nominated for the Performing Arts award.
 
Unfortunately my charity bike ride (Marco's Big Ride) has had to be postponed because I have tendonitis in my knees and until they heal sufficiently I am unable to train for the ride.
 
In September I will also be attending NAS head office for a meeting regarding the Adult Autism Strategy which I am looking forward to.

I have also set up an online radio show called Sounds from the Spectrum which showcases and celebrates talented artists who are on the spectrum like Scott James, Georgette Hilton, Carly Ryan, Martin Finn and many more. More information about this can be found on Facebook at www.facebook.com/groups/soundsfromthespectrum/ where you will find in depth details of all the artists I am featuring as well as videos and links to their individual websites where you can purchase CDs by them.

By Marco G

Autism and Las Vegas Don’t Mix

We have three children, very typical in all ways to children of their age but with some particular characteristics.

Our 13 year old son is diagnosed with Aspergers and manages daily life very well, his high anxiety having disappeared since starting a very structured and organised school. Our 8 year old, the happiest of children, just needs some gentle reminding to not still run across roads and to ‘stop, think, move around the object you’re just about to fall over and then go, go go’!

But it’s our 9 year old daughter that has the greatest difficulties. She has a developmental profile that is difficult to neatly shoehorn into a definitive diagnosis. She is described as having tactile defensiveness, sensory processing difficulties, perfectionism, obsessionality, extreme reactions, distractibility and a sense of social frustration. We’re told her behaviours and emotional responses fall within the range for oppositional behaviour, inattention and on the overall Attention Deficit Hyperactivity Disorder index but she’s too perfectionist to be considered for an inattentive ADHD condition and that while her rigid patterns of behaviour and sensory processing difficulties could be considered traits of an autistic spectrum condition she does not fulfil the criteria for Asperger Syndrome.

Going anywhere together as a family of five is never, ever easy or relaxing. So I was somewhat open mouthed and disbelieving when my husband suggested we should take the children on a 17 day road trip around the hottest parts of the USA in one car, together, and mostly share the same motel room. He thought it would be a fantastic experience before our son disappears into the teenage angst of being seen out with his parents and so I agreed with a large amount of trepidation and with the insane belief it would all be ok because it was a ‘holiday’ and families are meant to have fun and relax and love being with each other on ‘holiday’.

Driving around Utah, Colorado and Arizona was indeed a once in a life time chance to see some of the most beautiful places on earth and it was full on and fun but it was not relaxing and although we all love each other to a degree no one could ever understand or dream of, sadly we don’t like being together as a family as it’s so rare that we genuinely get a moment to relax and enjoy each other and it’s heartbreaking to admit it.

Here are the pitfalls and tips we bizarrely hadn’t considered before we left hoping we could - for one time only – be like The Waltons. But then what family goes on holiday and doesn’t come back needing therapy.

Pitfalls – What Didn’t Work

1. The accommodation. It’s really hard to find accommodation for more than 4 people and we often had to share a large motel room with two double beds and a pull out. We should have anticipated the obvious problem with this but didn’t think it through and got upset with ourselves wondering why our expectation of being able to bunk down together didn’t work. Our daughter with sensory processing problems announced on day one that she would not under any circumstances be able to share a bed with her sister or even us ‘as you’ll all crease the sheets’ and then all the other things she couldn’t do such as share the few remaining clean t-shirts with her sister (having touched someone else in the past), allow anyone to put anything down or near the bed she wanted to occupy or touch anything she may have placed in the often cabin fever small motel room. On the few nights we had adjoining rooms my husband and I were often joined by the other children at different points in the night who couldn’t stand the ‘order regime’ imposed on them by their sister.

2. Eating out. Going to restaurants particularly for breakfast is what I consider being on holiday, only when having a good cup of coffee can I relax and face the day. On day one our daughter had a shut down in the first place we tried eat in and it went down hill from there. Nothing was ‘right’ in any restaurant we entered over a 17 day period as our daughter finds it almost impossible to feel comfortable in new places with the mix of people, sounds and smells and before her senses have time to adjust she panics and thinks she can’t cope, runs out, melts down or shuts down (head on table, goes rigid). Hungry, tired and beginning to realise we weren’t going to get any kind of food that didn’t exist outside of a drive thru we weren’t coping either. I don’t think over the entire holiday we actually made it to the end of a meal together as one of us had to take one or two children and leave before the end. 3. Going to any kind of new or busy venues. For some reason, the stupidity of it still surprises me, we decided to go into Las Vegas on not one but two evenings as it was our final stopover before flying home. I can’t quite understand the fascination with a place so devoid of charm but felt we should at least see it. The first night was not a pleasant experience for our daughter but we got away with it, the second night was a disaster. Having taken a taxi to ‘The Strip’ the sheer unbearable bombardment of noise, lights, people and endless stimulation made her feel sick and faint, she sat on the floor with her head covered and the evening was over as I carried her to find a taxi to go straight back to the hotel. We spent most of the end of the holiday going separately to different places depending on what the children could process.

4. Autistic meltdowns and nose bleeds. Sadly but not unsurprisingly our daughter had a number of meltdowns from the stress of trying to keep it all together with all these new experiences. Probably due to the heat, dry air and attitude she had a number of particularly scary nose bleeds. She’s always been susceptible to them but the pressure she puts herself under with the sheer expulsion of emotion was truly horrifying. Apart from ensuring she’s not in physical damager there is very little we can seem to do to help her ‘come back’ or ‘come down’ but not being on home territory and with people listening in the rooms next door, put a huge amount of stress on us all. At one point she had such a violent nose bleed that the blood covered most of a bathroom including a pile of white towels on which she had passed out/fallen asleep on the bathroom floor from sheer exhaustion. We had waited for her to fall asleep as would not have been able to hold her if awake for aggravating her skin further, before carrying her into our bed while I stayed awake to ensure she didn’t bleed again in the night. We then carry on as normal until the next incident.

Tips - What Worked

1. Our son with Aspergers took enough books to read one a day and his music to zone out everywhere he went. We’ve stopped aiming for ‘manners’ and let him read/listen to music if we could eat out and were amazed he would sit for periods of time in the few places we could get our daughter to sit in because he only eats ‘his food’ not everyone else’s kind of food but thankfully the diet coke was endless and everywhere served the only thing he would eat - plain bread or thin cut French Fries. We snuck in a carrot and celery having made detours to find supermarkets that sell the few ingredients he will eat and he was happy ignoring everyone in his own world. He’s a very goal orientated child who decided on ‘a mission’ at the start of the trip, to collect book marks of every town we stayed at and this fine balance of being free to zone out, motels with swimming pools, diet coke, dry bread and book marks kept him happy.

2. A really large car. We managed to space the children out physically so nothing was touching them to set them off.

3. Individual DS players so the three children could ‘zone out’ in the car in their own worlds. Seems obvious but my husband commented ‘why is it that it’s like they’ve had Valium when we’re in the car and the moment we open the doors its meltdown’.

4. ‘Adventure Time’. This brilliant children’s cartoon was on every half hour and was a great distraction and diffusion.

5. On the upside our daughter started to talk about ‘my autistic behaviour’ for the first time. She made some suggestions of what might work for her in being able to go into a restaurant and after a number of stressful trials and errors (at one point me husband had to leave and sit in the car as was so stressed by it all) we came up with a plan whereby our daughter and her dad would enter the café first and take their seats (at a table without any chair behind it so not as to touch our daughter’s chair). The rest of us were then to take seats facing and adjoining her. This often resulted in two or more moves within any venue, sometimes not even bothering to consult any more with staff for the sheer exhaustion of it all and after a glass of wine we were able to ignore the people now watching the entertaining Brits moving around the restaurant.

For all the difficulties holidays like this are wonderful. Seeing our children pick wild raspberries for the chipmunks, play hide and seek in million year old Canyons and roast marshmallows on an open pit fire in Colorado and then fall asleep under the stars was truly amazing. The tough bits were trying to find some space in any 24 hours to spend with your partner and not having to split up as a family in the day or night because one or other child can’t go out for food or can’t share a bed because it just took an hour for her to iron out the creases or take an hour to organise their travel bag so you can’t go to the pool as have to wait for perfection to be completed by which time your husband has taken the other children on a trip somewhere else. It’s a family holiday but one that involves most members having to do things separately. Maybe that’s not such a bad thing but when you’ve been desperate for the company of ‘family’- of some quality time with your husband and just some chilled out time with your children it can be a really lonely experience being together but not sharing each other’s worlds.

Paula Donovan

Robyn's review of 'The Curious Incident of the Dog in the Night-time' at The National Theatre

The Olympic Games and Paralympic Games are not the only exciting things happening in the capital this summer. The London 2012 Festival is also taking place and it features a new production of Mark Haddon’s 2003 novel 'The Curious Incident of the Dog in the Night-time'.

Adapted into a play by writer Simon Stephens, the show opened last Thursday at the National Theatre in London, and I was given the chance to see it before its official opening.

Luke Treadway, who you may have seen in the film Attack the Block, plays the lead role of Christopher, a 15-year-old boy who probably has Asperger syndrome. Interestingly, the cast do not just play actual people - they also take on roles such as a talking ATM (automatic teller machine) and items under a bed.

The play is staged in the Cottesloe Theatre, the smallest of the National Theatre’s three spaces. The stage is square with seats arranged around and above all 4 sides, and because it’s so small, wherever you’re sitting you’re very likely to have an excellent view.

The flooring of the stage is very dynamic - I have never seen anything like it! Christopher stands on it, draws on it, has guiding lights appear on it and at one point he even gets under it. It looks amazing and beautiful.

The portrayal of autism in the play is interesting. As many readers of this blog will be very aware, autism can effect sensory perception - particularly if someone is under stress. For people outside the autism world, this is a probably one of the lesser understood and perhaps less obvious effects autism can have on an individual. However, I think the way that the play depicts this experience is ingenious. I could really understand how Christopher was feeling, and I was absolutely delighted to see such a fantastic production – it is funny, clever and poignant.

When Curious (as the National Theatre has styled it – i.e. a shorter version of The Curious Incident of the Dog in the Night-time) was first published it was criticised for the way Christopher is portrayed. Some people felt that no single person would have all the traits of autism that Christopher does. Mark Haddon even expressed regret that a mention of Asperger syndrome was printed on the front cover of the book.

To me, this is an interesting discussion, because if you listen carefully to the autism community, while some people say they can’t relate to Christopher, there are plenty of people who say they can, and that they understand him.

As we know, everyone is different and autism affects each individual differently, so I don’t think you can’t say that one person has too many or too few traits. (I imagine this is the same way that neurotypical (non-autistic) people feel about the way they are portrayed in books! They don’t all relate to Wallander, Sherlock Holmes, and Scrooge!)

It’s also important to understand that “traits” can be displayed (present) in many different ways. For example, Christopher hits people when they touch him. This could be because he is hypersensitive to touch and is not able to predict people’s actions (social imagination). Many people who have autism would never hit anyone. Also, since we are different, many of us don’t mind firm touches but we don’t like tickle (gentle) touches.

I don’t think it is bad to have a character who has lots of traits of being on the spectrum, as long as they are portrayed properly and the writer takes responsibility for this. I feel Mark Haddon and the director Marianne Elliot do take responsibly. In fact, it was because Marianne wanted to research autism that I had the opportunity to meet her and Katy Rudd (staff director) to discuss the play and autism. They were very willing to take on board my feedback.

You have to know quite a bit about autism and to have met lots of people on the spectrum to really be able to see how one individual fits into the diagnostic criteria. Nevertheless, as with any work of fiction, it’s important to remember that it is just made up, and as a consequence you cannot always expect people to behave in exactly the way we anticipate.

I think this play provides hope to people, not just through Christopher’s story and the journey he goes through, but also because the play is on at the National Theatre. Other books such as the History Boys (by Alan Bennett) started at the National and have gone on to tour the UK and be made into films, so who knows what will happen next? Nobody knows - we must wait and see!

I’m aware that many of you who live out of London will be reading this and thinking that you wish the production was on closer to you. Well there is good news: on 6 September the play will be beamed via satellite (I presume) to cinemas across the UK. Check out www.ntlive.com to see where it will be on.

There is also a “relaxed performance” on 13 October for anyone on the spectrum or who would be more comfortable in this environment. I think this might be like an autism friendly screening at the cinema but at a theatre.

By the way if any of you are fans of trains there are at least 3 different types in the play.

Raising awareness of autism, one story at a time

Ever wanted to tell the world about your experiences with autism? AAN Ambassador Helen Kelly explains why she started her blog, mumwithoutportfolio, and what she hopes to achieve through sharing her family's story:

I started writing my blog mumwithoutportfolio in July 2011, two months after my youngest daughter Emily was diagnosed as being on the Autistic Spectrum. There were a number of reasons why I decided to write this originally it was because I felt very alone and left to understand what it all meant for my daughter and our family but I also wanted to raise awareness about Autism and what it is like trying to see the light through the tunnel. I was very surprised by peoples reaction to my daughters diagnosis which ranged from well she doesn’t look like she’s autistic to she’s not autistic she just needs to learn. It was the drive to try and change people’s opinion of children on the Autistic Spectrum that spurred me on to write my blog because I am very much of the opinion that education brings awareness.

Topics I have covered throughout my blog posts have included shopping, school, friends and the death of my dad due to lung cancer. Although the posts haven’t always been upbeat they are always a true reflection of life and honest.

I have help pages on my blog which provide a bit of information and also directs people to the NAS website this is because I would not like to give anyone the wrong information as I am not an expert in Autism but I am an expert in how autism affects my daughter and my family.

I have received comments from people who I don’t know supporting me and have recently set up a Facebook page for the blog. I also tweet my blog page under the hash tag Autism awareness and I have met many people through this.

I would encourage other ambassadors to plunge into writing a blog, it’s free you can do it when you want to and most importantly you get to raise awareness and educate people.

NAS campaigners help create more opportunities and support for people with autism to find sustainable work

Since launching the Undiscovered Workforce campaign in  March, a number of Ambassadors and Champions have successfully worked with their MPs to run local events to raise awareness and increase number of people with autism in employment. 

 

The cooperation between passionate campaigners, interested local MPs, local authorities, charities, Jobcentre Plus and crucially, major employers is at the very heart of this campaign.

 

What's happened so far

 

In Leeds our ambassador Penny has joined forces with her local MP Rachel Reeves.  A combination of Penny's enthusiasm and Rachel's political leadership mean that the Council is taking notice.  There is an employment sub-group of the autism partnership board and a big one-day conference is being held next year to bring together big local companies, Jobcentre Plus and people with autism looking who need support to thrive at work. 

 

In Derbyshire, another of our dedicated Ambassadors, Ann, has engaged her local MP Heather Wheeler. They have got together to engage with the local Chamber of Commerce and leading employers based in the area.  Ann is also working closely with her local authority, which is planning to employ someone with autism in the next few months.

 

In Suffolk, activities were spearheaded with the support of Waveney MP Peter Aldous, who spoke at a local Jobcentre Plus event, along with the NAS, the National Apprenticeship Service, and Lowescroft College.  Suffolk County Council now has funding to hold employment events in the county in partnership with the NAS. 

 

Have you contacted your local MP about the Undiscovered Workforce? Would you like to help create more opportunities and support for people with autism to find sustainable work?   Take action here http://www.autism.org.uk/undiscoveredworkforce

Maz's 1,000 mile mission to make football accessible for children with autism

NAS ambassador, Maz Ataie battled against the clock last weekend on an attempt to visit all 20 Premier League football stadiums – in just 36 waking hours.  

Maz embarked on his 1,000 mile mission to raise awareness of the difficulties that children with autism can face getting involved in grassroots football. He was inspired by his eight-year-old son Jake who has Asperger syndrome, and loves football.  

Joined by friends Ed Jones (34), Dave Leeks (34), and Chris Patson (38), Maz kicked off his sporting challenge at 8am on Friday morning at Loftus Road, home of QPR FC. After visiting three other London clubs, the team headed over to Swansea before racing off to the Midlands and the North East, ending the first day of the tour at St James’ Park in Newcastle.  

An early start on Saturday saw a visit to clubs in the North West, including visits to Old Trafford and Anfield. Throughout the tour, clubs donated items that Maz will auction off later this year for the NAS. Items that will be up for auction include a Manchester United shirt signed by England star Wayne Rooney and a football signed by the Chelsea team.  

Maz and his friends smashed their target by three hours, ending their tour at Tottenham Hotspur’s ground White Hart Lane, where they had a well-deserved VIP tour of the stadium.

Maz will be writing a blog story very soon with more details about how he got on!

Undiscovered Workforce campaign gathers pace

We've had loads of interest from ambassadors and champions in our Undiscovered Workforce campaign on employment. The campaign asks MPs to take the lead in creating employment opportunities for their constituents with autism, by bringing together local employers, people with autism, the local authority and other services in the community. The aim is to raise awareness of the difficulties facing people with autism who are looking for work and to ensure there is specialist support available for employers, as well as employees, to help people with autism succeed in the workplace.

Helen Kelly, an Ambassador from Tyne and Wear, supports the campaign because she is concerned for her 12-year-old daughter who has autism. "Her future worries me", she says, "She will be trying to get a job and I think her autism will be a disadvantage. There needs to be more awareness of the condition out there and people with autism should have the right to the proper support in a job".

Although she admits she was a little nervous at first, Helen wrote to her MP on the issue - the first time she had ever contacted him. However, her feelings soon changed when she realised she'd been sent a standard letter: "To be honest, I was a bit annoyed to get a generic email in reply. This is a serious thing - you can't just send a generic response".

Helen contacted the NAS with her MP's reply and we gave her a special response letter we've written for Ambassadors and Champions to send when they're not satisfied with their MP's response to the Undiscovered Workforce campaign.

Now Helen's looking to the next steps in her campaigning: "I would like to meet my MP and put my case forward. This is a real issue, not only for people who are in the workplace now but also for those people with autism who will be working in the future. There are thousands of people in this situation, and the have the right to work like everybody else"

If you want to support the Undiscovered Workforce campaign you can send a letter to your MP through our website here: www.autism.org.uk/undiscoveredworkforce. If you've already sent an initial email and haven't received a reply or aren't satisfied with the response you have received, don't be afraid to politely challenge them on it. Or if your MP asks you how they can help, make sure you take them up on their offer. Get in touch us at aan@nas.org.uk and we'll give you advice on what to do next. 

There are loads of great things going on with the Undiscovered Workforce campaign around the country - we've had MPs writing to local businesses, organising breakfast events and pushing Local Authorities to set up supported employment services - don't let your area miss out!

Ralph on the SEARCH for employment

Ralph Hemus, campaigning for the National Autistic Society, recently hosted a superb radio feature on FromeFM “Our Vision, Our Future” to promote an exciting programme to help young people with learning disabilities find paid jobs in his local area.

Project SEARCH, operating through Bath and North East Somerset Council, combines classroom teaching with practical work experience within the council including schools and partner organisations.

It is a training program for special needs students who have completed their academic requirements but would benefit from a workforce development program that includes employability skills and internships in a local but large business.

Ralph recently gained the job of Admin Officer at the council after his year on Project SEARCH. On his radio show, he introduces teachers and job coaches to talk about the programme, including his own coach Pauline, who spoke of the importance of letting young people with learning disabilities know that “work can be a positive experience”. Ralph also discusses his own experience as an intern, describing the benefits of reduced anxiety and gaining a better idea of what he wants to do through taking part in supported placements. Ralph's show also includes interviews with his fellow students, including 19 year old Chloe, who like Ralph has successfully got a paid job. “I think Project SEARCH helped me out a lot by giving me confidence”, Chloe said of the project, adding that she had not travelled on her own until taking part in Project SEARCH, and that her favourite thing about her new job as a receptionist was the opportunity to meet people.

Gaining paid employment was the unanimous wish of the young people interviewed, and many also emphasised that they wanted to live independently. Described by one of its coaches as “a mixture of fun and hard work”, Project SEARCH aims to make this possible by incorporating job skills and personal independence training with internship experience in a variety of fields, including administrative and clerical work, catering, maintenance support, customer service, and care work with children or the elderly. In order to support the specific needs of young people on the programme, students can access their job instructions in the form of tick lists, prompt cards or photographs as their needs require, and the work experience is supplemented by practical skills coaching.

It was not only the young people who reported good experiences in their involvement with Project SEARCH. Ralph has also worked to promote Project SEARCH to local employers, interviewing employer participants across businesses and services who described the interns as assets to their workplace. Heather Thomas at Keynsham Health Centre encouraged other local and national businesses to offer placements, explaining how helpful the Health Centre’s intern had been at carrying out administrative tasks during a particularly busy time. The Deputy Headteacher at Castle Primary School also spoke warmly of watching interns “really grow in confidence” and emphasised that to employers like her, “the benefits far outweigh any organisation that has to be done”.

Ralph’s guests closed the feature by thanking him for his hard work promoting a scheme that has not only benefited him but has encouraged many other young people and employers. The feature identified ongoing challenges, such as the high rate of unemployment amongst young and especially young disabled people, the lack of infrastructure in some areas making it difficult for interns to get to work and the challenge of changing employer attitudes. Despite these challenges, Ralph and the interns and staff at Project SEARCH have demonstrated that given the right support, young people with autism and / or learning disabilities can truly thrive in employment, bringing great benefit both to themselves and to their communities.

To listen to Ralph’s fantastic radio show online, go to http://www.fromefm.co.uk/ and look for ‘Ralph’s Finest Hour – 2^nd June 2012.

For more information on the National Autistic Society’s Undiscovered Workforce campaign, follow this link.

Getting People to Listen

I have had lots of problems with my NHS mental health trust whose social workers are on secondment from my local LA (local authority/council) and have made a good link with my purchasing manager (he is the person in charge of what gets bought).  There are two main types of purchases bulk - one which is used for some providers who have many service users who access them for varying amount of time and spot purchases that are one off or single service users’ purchases.

A social worker contacted me to arrange my review of my support. I asked her after it was clear she knew nothing about autism if she had been trained in the Autism Act 2009. As she hadn’t, I explained it was law,  and the following week I met her face to face and I asked her if she had read up on it, explaining that it is an act and therefore law.

I explained that you can’t represent someone at the panel (a meeting to decide how support funds are allocated) if you don’t understand autism because it means you can’t understand my needs. I then submitted a complaint.

The purchasing manager then e-mailed the head of training and copy and pasted from the statutory guidelines the duty that the NHS LA and foundation trusts have for training. Here it is:-

• Local authorities, NHS bodies and NHS Foundation Trusts should seek ways to make autism awareness training available to all staff working in health and social care. In line with the principles set out in Fulfilling and Rewarding Lives, as a minimum autism awareness training should be included within general equality and diversity training programmes.

• The core aims of this training are that staff are able to identify potential signs of autism and understand how to make reasonable adjustments in their behaviour, communication and services for people who have a diagnosis of autism or who display these characteristics.

• Those staff who are most likely to have contact with adults with autism are the priority groups for training.

• In addition to general autism awareness training for staff, local areas should develop or provide specialist training for those in key roles that have a direct impact on access to services for adults with autism – such as GP or community care assessors – and those whose career pathways focus on working with adults with autism, such as personal assistants, occupational therapists or residential care workers.

The end goal of this specialist training is that, within each area, there are some staff who have clear expertise in autism.

The result of my complaint is that social workers have now signed up for the training available in the borough and after this email from the purchasing manager hopefully more training will be provided.

By Robyn S

"Being good at SEN must be seen as part of what makes an excellent school, not just an optional extra" says NAS Ambassador Andrew

As part of my work as an Ambassador for the National Autistic Society, I was invited to be a representative on the Labour Party’s policy review committee on Special Educational Needs. As I’m sure many of you know, the Government published a Green Paper and Next Steps document on SEN reform, outlining what they are planning to do to reform the provision of SEN in England. The two most important parts of this reform are the combination of different forms of assessment in education; health and social care for children with special educational needs into a single assessment, and the allocation to each child with SEN a personal budget which they can use to purchase services in health, social care and education to support their child. The original green paper included a commitment to “removing the bias towards inclusion”, but this appears to have been dropped from the next steps document.

As one of the most significant reforms to SEN in the past 25 years, the proposals have understandably raised concerns among families living with SEN. Many have questioned whether personal budgets are suitable as a means of providing support to children with special needs, and how this will fit with the existing system. As well as this, many thought that the single assessment might lead to a lack of proper assistance for those who did not meet the criteria. Finally, there are concerns about how the plan for a single assessment and personal budget will fit together with the government’s plans to give more autonomy to academies and free schools.

The Labour Party policy review hoped to do two things, firstly, to help provide the Labour Party with a response to the Green Paper. Debate is critical in any democracy, and we hoped that through conducting a review with the input of experts in the education and disability sectors, as well as the parents and carers of disabled people (and some disabled people themselves), we could provide a robust contribution to the public discussion on SEN. The second aim was to form the basis for the Labour Party’s manifesto for the next General election, meaning that ultimately what we decided, in consultation with others, could become policy and improve the lives of thousands of children with SEN.

My role was to provide some input into the review from the perspective of someone with Asperger syndrome who has been through mainstream education. I can’t claim to speak for the experiences of all people with autism, but my own life experience is something which I tried to bring to bear in my role as a panel member. I felt relatively inexperienced as 22 year old asking questions to people who’ve spent the best part of their professional lives helping disabled children, along with those families who deal with it every day of their lives, but I hope I've done something positive for those with SEN.

There were four sessions of the policy review: an outline of the Green Paper, teacher training and specialist professionals, identification and provision, and accountability and local authorities. Among the many contributors, there seemed to be a general consensus. All schools should have teachers who are trained to identify and support those with an SEN, and this must form a much greater part of teacher training than it does currently.

Being good at SEN must be seen as part of what makes an excellent school, not just an optional extra. Parents should have a legal right to have their children’s needs (as identified in the single assessment) met. Finally, local authorities should be examined to make sure they are meeting the needs of children with SEN, with sanctions for those who are not.

I was able to have the opportunity to participate in the policy review through the help of the NAS. Having worked with them before, I was keen to sign up as an Autism Ambassador to continue working with them to promote the rights of autistic people and their families to live a life free from discrimination and to have the best possible opportunities to things which many people take for granted.

By Andrew Rhodes

Autism Summit in West Sussex discusses upcoming SEN reforms

Hello everyone, just thought I'd give a quick update in how things went at the Autism Summit last week...after considerable pre-match nerves from me, I'm really happy to say that the event went extremely well, I even managed to get my little speech out, David Cameron style (technique not content!), in full and to a room of confidence boosting nodding heads. A decent number of people showed up and I was impressed by the representation from West Sussex County Council and the NHS.

Nick Herbert, my MP, was a genuinely committed and interested Chair and I got a real sense that this was something which he has taken very much to heart. I was first up and that gave me the opportunity to set out some of the main issues raised by the Green Paper, which I think our local agencies could develop to create a better picture for the provision of local services for people whose lives are affected by autism.

I raised the need for a single, comprehensive directory of local autism specific services, something that could easily become part of the local offer, the need for autism specific training across the board - to include not just school, teaching staff and SENCO's, but health visitors, social workers, child minders, LA staff - to become mandatory, and a recommendation that local services must be available to all children and young people with a diagnosis and not just those with statements or EHCP's.

One of my big concerns is that, as the new single assessment tool is developed, it will start to operate in a way which means that children on the 'high functioning' end of the spectrum will fall outside it's criteria. There is evidence from the Pathfinder Group here in Mid Sussex which shows that this is already happening and I am very concerned that these children will in the future fall outside the systems which exit to give them the vital support and intervention they need. The Government is clear that it wants to reduce the numbers of children with SEN and this ideological goal appears, for the moment at least, to be finding it's practical application in the new single assessment for an EHCP.

I was also very keen to stress that families must be a key part of any development of new strategies and local services. Summits like this one are great, but the views of children and young people and their families need to be heard regularly, and actually then used to shape policy going forward. It was encouraging therefore to hear how Katie Glover, (Principal Commissioning Manager Learning Difficulties WSCC) is developing the West Sussex Autism Strategy in very close partnership with local families - she remarked that the (at best, unimaginatively, named) 'Vulnerable Adult Group', which attempts to draw together services and support for adults, families, careers, would not exist had it not been for the input of local families.

It remains unclear whether something like this will happen for children, the local offer seems a good opportunity to do so and John Philpot (Principal Manager, Special Needs & Disability, Children’s Services WSCC) certainly seemed very keen to foster closer family/council connections. This is definitely something I will be following up. This also clearly leaves the possibility of a join up between child and adult services hanging in the balance...'Vulnerable Child and Adult Group' anybody?....

We heard a lot from the various council agencies about what work they are doing now or plan for the future and as the session went on, the sheer vastness and disjointedness of this patchwork of disparate agencies purporting to provide 'autism' services became for me the real stand out issue. One mother who gave frankly, harrowing testimony of her struggle to find support for her 15 year old son, stood up at one point and said, "all these services, all this support...I had no idea it was there". Clearly work needs to be done to create a joined up 'directory of services' or 'portal', which not just well informed and autism specific, but accessible and well signposted.

I'm going to let the dust settle for a couple of weeks - I think local agencies always expect to get a bit of a hammering (and they did in part!) and I'm much more of a carrot than stick kind of a person - and then get back on to the council.

The summit also heard from Richard Brown of Autism Sussex - a local charity making direct, grass roots interventions - who suggested an autism partnership board, comprising families and the council. I think this is a good strategy, and I intend to chat with him about how we can progress his idea. I want to be positive and practical, little by little I think we have a real chance to make positive change.

At the summit we started a relationship and I hope it will be productive. Here's a link to some local press coverage and a nice little pic of Nick and his 'autism' parents:- http://www.spiritfm.net/news/sussex-news/710738/parents-call-for-better-autism-care-in-west-sussex/

By Victoria T

Sky News bullying feature

It was a few weeks back, but we just wanted to show off the great feature on bullying on Sky News featuring ambassador Deb and her son, Charlie.

It's a fantastic piece, and Deb and Charlie were brilliant, I'm sure you'll agree!

http://www.youtube.com/watch?v=I24nGNYH2dQ&feature=player_embedded

Ambassador media stars!

May has been a bumper month for Ambassadors, who have turned media stars to help us raise our voice during our 50^th birthday month.

We’ve seen you on our TV screens, heard you on the radio and read all about you on the pages of national and local newspapers!

Thanks to everyone who took part – it would simply not have been possible to make the impact we have without you!

As we prepared to publish the results of our 50^th birthday report, “The way we are: Autism in 2012”, we wanted to tell as many journalists as possible all about our findings.

Kicking things off, Ambassador Valerie went for the double-whammy, talking to The Independent and BBC London 94.9 about her experiences of workplace bullying. The story went on to hit the airwaves nationally on BBC Radio 5Live.

The media frenzy didn’t hold up through the week, with outlets including, The Observer, The Sunday Mirror, Radio 4 Women’s Hour, the Guardian and many more covering a range of autism topics arising our 50^th birthday report: from diagnosis to employment to what it’s like to care for someone with autism.

On Sunday, Ambassador Deborah and her son, Charlie, hit the TV screens on Sky Sunrise, after a crew from the show went to Charlie’s school to film him talking about his experiences of bullying. The story went on to be picked up locally, with mentions in the news bulletins of local radio stations the length of the country, including LBC 97.3, Heart Wiltshire, Magic London, Hallam FM and many more. The story was also covered online, so why not have a read in Children & Young People Now.

The amazing contributions of our Ambassadors weren’t limited to talking about our 50^th birthday though, and May saw a host of Ambassadors doing their bit to raise awareness in different ways.

NAS Northern Ireland Ambassador, Sharon, kicked off May’s coverage by talking to The Belfast Telegraph about life with her son, who has autism.

Ambassador Tessa, and her son Nick, went on to hit the headlines with a heart-warming story about the family Corgi, Sally, who has helped Nick overcome his fear of going to school and leaving the house. Tessa, Nick and Sally appeared on their local ITV news and went on to share their story with The Sun, The Mail Online, Huffington Post and Yorkshire Post…. We’ve got a feeling it’s not the last we’ll see on Sally, Nick and Tessa!

As the month went on, we saw big headlines for Ambassador, Sophie, who spoke to Channel 4 News and on the BBC News Channel about the impact that proposed reforms to the Special Educational Needs (SEN) system could have for young people with autism in school, including her daughter, Grace.

Finally, Sarah Hewitt, Ambassador, got involved by talking to The Times’ Weekend Supplement about being a career woman with Asperger syndrome. She doubled up her media presence, when she made an appearance on ITV1’s Lorraine programme, where she talked about the same themes.

Phew… what a month it’s been.

Thanks so much to all of you who took part to help us celebrate our birthday. Thanks also to the many, many Ambassadors and Champions who got in touch to share your stories. It’s a shame we couldn’t use them all in the media this month, but it is really important that we hear from as many of you as possible, so please keep telling us what you’re up to and what you want to talk about.

Ambassadors help us celebrate 50th Birthday

To mark our 50th birthday, we commissioned the largest ever survey into autism, in order to show what life is like in the UK for people affected by the condition. Over 8,000 people, including many ambassadors and champions from the AAN, were among those who took part.

You can now read the full report, ‘The Way We Are: Autism in 2012’, online. 

Some of it does make for difficult reading but for all the troubling experiences there are also many stories of hope and courage.

Covering the wide range of autism experiences from diagnosis and employment to school and independent living, the report shows that whilst there have been enormous strides in autism awareness since the NAS started life in 1962, there is still work to do.

Ambassadors Sam, Gabriel and Ben were among many Ambassadors interviewed for the report. 

We were also really grateful to Daniel, Jennifer, Basil and Mark who were involved in a focus group many months ago to help with messaging for the 50th

Many, many thanks to all who took part in the research and got in touch to share their experiences with us. 

Tessa and Nick raise autism awareness... with Sally the dog!

Here's a fantastic piece of coverage on the ITV news, featuring our ambassador Tessa, her son Nick and their dog Sally.

Sally has really helped Nick to get out and about and to socialise with other people. It's a great story - watch their news feature, here.

Nigel raises awareness through his Marathon effort

Well that's it over and done with!! London marathon 2012 was a fantastic experience and the support I was given along the 26.2 miles was tremendous.

The night before I only managed 3 hours sleep, excited and also nervous of what lay ahead. Having been up since 4:45 at my hotel in London docklands I made final preparations for the day and headed down the the hotel restaurant for breakfast. The breakfast available was fantastic everything you could think of, so tempted to get a cooked breakfast but porridge and small amount of scrambled egg was Ll I had.

The biggest test of the day so far was trying to get to the start line in Greenwich Park. I headed for the nearest tube station and my plan was to follow other fellow runners but when I arrived at the station it was deserted.
Soon a train arrived and I jumped on, nobody in sight except one gentleman who I asked for directions. He explained where I needed to go to change trains and platform number, and the kind gentleman even showed me to the platform I needed, thank you to that gentleman.

Arriving at Greenwich around two hours before the start I had a wonder around the start. Grabbing free water and locazade I parked myself under a tree and listened to some music and tried to relax.
Watching some of the strange sights arriving included, a man with a tiger on his back, cool runnings bobsleigh team complete with bobsleigh.
With 9:45 fast approaching I handed my bag in and lined up at the start, mine being red zone 4.

9:45 and I'm off hitting the London streets and 26.2 miles to go. The first few miles came and went very quickly support for everyone from the crowd was fantastic, and so many different sites along the route, bands, dancers etc.

Reaching the half way point and my time was 2:04 which I was more than happy with. Now in the heart of the docklands and passing the 14 mile mark and seeing the elite runners passing me on the opposite side hitting their 21 mile mark, I was wishing I was at that point.

Legs starting to hurt and coming up to a gel station I was greatful for the extra boost. Crowds were massive and the idea of having my name on the front of my vest was an excellent idea, the boost I got from the crowd shouting my name was just what I needed.

Getting to the 21 mile mark and the sight of the National Autistic Society cheering point was fantastic, the cheer and calls of my name kept me going for the final 5 miles.

At this point I was slowing down my time was slowing and at 25 mile mark my time was 4:18, one more mile need to keep going that's all I could think, turning into Birdcage walk the welcome sign of 800m to go Buckingham Palace in the background turning left onto the mall it was there just a few 100m to go the crowd knowing I was hurting shouting my name, policemen and women, the armed forces people and the marshalls shouting come on your there keep going was nothing I had experienced before 4:34 and I was done its over I have completed the Virgin London Marathon 2012.

For the next few minutes everything was just a blur a was ushered into a line of other runners and timing chip was removed and medal presented.

Collecting my bag getting a well deserved drink and pictures taken, I headed for the NAS meeting point. Greeted by NAS volunteers who kindly carried my bags and escorted me the short walk through Horse guards parade and to the NAS hotel.

The welcome I received was fantastic everybody cheering when I walked through the doors. I gratefully accepted the offer of a shower and massage just what I needed.

So time to head back to my hotel and have a well deserved beer!!

I would like to take this opportunity to thank everyone who has supported me and sponsored for the London marathon. A massive thank you to The National Autistic Society for giving me the opportunity to complete one of my lifetime goals and for the fantastic support they gave me on the day.
Another big thank you has to go to the crowds in London you were fantastic and helped me get through the day, you are a credit to Britain!

My page: http://uk.virginmoneygiving.com/NigelSmalley

 

Nigel

 

[this was taken from Nigel's blog, here: http://nigelsmalley.blogspot.co.uk/2012/04/marathon-completed.html?m=1]

Grace Under Pressure: Sophie's Marathon story

When I think about Sunday, April 22, the first thing I think of is the noise: the boom and clamour of the crowd all around, as if I were caught in the centre of a rolling wave that hurled me along and along; the whoosh and thump of my heart behind my eyes and in my ears; the steady one-two-three-four of my breaths, matching my stride; and behind it all a whisper, an insistent murmur behind the din and the hot roaring pain that came later, a voice that said: Grace, my Grace, my girl.

The night before the race I travelled to my sister-in-law's flat, a tiny fairytale garret at the top of an old Victorian house, that looked out over south London and the start line, fifteen minutes' journey away. All that day I had been distracted and quick-tempered, pretending to be a participant in Saturday family time while ticking off the hours in my head before it was time to leave. When I could finally go and pack it was a relief, even though, checking and folding my clothes, I felt more as though I was preparing for the executioner's block than the winner's podium. It took an age to pin my running number onto my vest -- my hands were shaking so badly that I fumbled the safety pins and pricked my fingers repeatedly. When I came downstairs to say goodbye to everyone the children stood awkwardly in the doorway, half-turned to run away and play again, half-aware that something was expected from them in this moment. A good luck card was produced. I hugged and kissed them all and bent to pick up my kit bag and then Grace was in my arms again. Voice muffled in my chest, she said: "Do this for me, mummy." I held her out from me to look at her face, ready to say something light-hearted and reassuring when, solemnly, she raised three fingers to her lips and held her hand out in salute to me, mimicking the gesture of love and respect used by her new heroine from the Hunger Games. It was so Grace: dramatic and funny and sweet, and heart-breaking.

That night I slept badly, tossing and turning for hours on the edge of nervous dreams that threatened to throw me into wakefulness. I rose at six, ate porridge and brushed my hair looking in the mirror at my terrified face and listening to the radio, which seemed to be playing in another country -- who were these people who could laugh and joke and comment on the lovely weather, preparing for a relaxed day of newspapers and walks and roast dinner? Outside the sky was clear and I walked down the hill towards the train station alone and in silence, avoiding Saturday-night piles of sick and litter. At a bus stop a woman lit up a cigarette. Then I turned the corner and there were loose knots of people with red race-day kit bags, waiting for the next train. Among them was a friend and fellow runner for the National Autistic Society. The tightness in my stomach loosened.

I don't remember very much about the start, except the mass of people around me and in front of me and behind me and the calming voice of my friend, who had done it before, and kept me distracted with stories. Helicopters buzzed overhead and cameras turned on us and a voice on a tannoy urged us to repeated cheers and whoops as we waitedly awkwardly, nervously, for the countdown to the start. Then there was a walk, a shuffle, people bouncing on their toes, discarding jumpers and waving goodbye to friends and somehow I'd got to the start line, a huge arch bright red against the blue sky and the pliant mesh of the timing board spongy beneath my shoes, activating the chip tied into my laces, and I was running.

Almost immediately the crowd was there, still modest at this point, strung out like beads along the barrier, sending us good luck and smiles as we set off. We passed an elegant Georgian home in the garden of which two young people on brass instruments puffed out a slightly melancholy version of the Rocky theme tune. I found myself pacing behind a purple Teletubby and in the time it took to puzzle his name -- what was it again, was he Po or Tinkywinky? -- I realised the first mile was done and I was running the marathon and bobbing along in the centre of a crowd all streaming forward in glorious colour and purpose. For the next few miles we passed several churches which had opened their doors to bless us and cheer us. In front of one, a vicar swung holy water, sending droplets arcing out over the shifting mass, and we raised our hands back, a communal thank you of hundreds. Then there was a choir and a band, and then another band, and then a string of pubs all open, with people dancing on wooden tables outside and waving at us.

So the miles passed. We came to our first incline and as one we all bent, and suffered just a very little bit, and turned to smile with relief at each other as we came over the brow. I found my pace with ease, checking my watch now and again to make sure I wasn't going too fast, or too slow, and finding every time I checked that my body was now automatically doing what I had trained it to do all those months and was carrying me forward with ease. A bit of me floated away and just watched the carnival around me as I progressed. Then the route turned right, and we all turned right and suddenly in front of us was Tower Bridge and I'd run twelve and a half miles and was passing under the grey turrets and the crowd was going crazy. Down along the highway the crowds were deeper and deeper -- three or four back from the barriers and screaming and shouting. It was a huge effort not to speed up, for I was loving every moment, grinning like a loony, knowing that my family were going to appear at any moment at mile fourteen, where the National Autistic Society had organised a cheering point. I ran with my neck craned, seeking out the purple and white and red balloons and banners and feeling goose bumps running up along the back of my neck in anticipation. And then there they were -- only on the other side of the barrier where I couldn't touch them -- so I yelled and jumped up and down, pumping my arms in victory and blowing kisses and the roar that went up was for me, for me and for Grace and for us all and as I ran away from them all I was overcome and saw the route ahead of me blurred for a while.

When I came to again it was mile fifteen and something wasn't right. Before I had time to realise what was bothering me I felt a hand on my shoulder, the runner behind me directing me to a voice in the crowd to my left. It was my friend and former running partner Karen, who had started with me nearly a year ago, puffing and blowing and swapping stupid jokes with me on those first training runs as we contemplated our first half-marathon. I shrieked with joy and ran to her and she grabbed me. Both of us wild-eyed and teary, we exchanged kisses and loving words -- none of which I can remember now -- and then I was running again, careering forward in a state of such massive emotion that I'm amazed, thinking of it now, that I didn't spontaneously combust on the spot.

By sixteen and a half miles I'd figured out what wasn't right. The pain in my back had bloomed again, despite those weeks of enforced rest and expert osteopath attention, and the first corresponding shivers of pain were sending feelers down my right leg. A swooping downward lurch of panic hit me. I tried to shake it off and keep going but the pain was building very quickly and with it, my distress.

So I did what you do when the going gets tough and the tough need to get going: I went for a wee and a think, veering off the course to where a line of portaloos stood and barricading myself inside one to shut in my panic. There, in the dim blue light and the animal smell of other people's fear, I chewed painkillers and took shaky breaths and thought: how do I do this, how do I get going again. The murmur told me: Grace.

So I came out and I started running again, only I couldn't. I told myself I would walk half a mile and then try again. I counted down to seventeen and a half miles and started running again. But the pain built up again, so I walked and hobbled, pushing out thoughts of failure and ashamedly hoping that no-one would see me walking, and then I forced myself to run again. By now I'd passed the eighteen-mile mark and there again was Karen, yelling at me from the barricades. Sagging with relief and self-pity I went to her and fastened myself around her neck and told her, choked, how much it hurt. She hugged me back tightly and told me how well I was doing. Around us the crowd looked at our embrace and looked at my face. Arms came out and patted me and told me I could do it. A blur of faces pushed into mine and said, come on, come on. Karen released me back into the flow of runners and I found my pace and ran again.

The next three miles were misery. At this point the route had taken us into the heart of Canary Wharf, all hard-faced glittering windows and no progress: we wound around and around, marking time and miles until we could be released back towards the centre of town and the final stretch. But not yet, and not yet, and not yet. We passed restaurants and wine bars and offices -- including my own place of work, an incentive to run straighter and a bit faster, no matter how much it hurt -- and here the crowds shouted for Toby and Robert, and yelled "Come on old man!" and rugby shouts of "Whoooooarrrrrgh!" for confident young specimens who strode out and overtook all around me.

Then, thank God, we were released, leaving the glistening maze behind us and heading back out towards my family and friends and the NAS crowd of supporters who I knew were all waiting at mile 21, scanning the crowd anxiously, their gazes turned so far out into the mass as they searched for me that they jumped when I came up the inside lane and whooped in their faces. Ecstatic, I did a little dance and they laughed, and grabbed me. My parents and sisters, tears in their eyes, clutched me. My husband leaned forward for a kiss and Betty and the boys -- hot and sticky -- smiled and put their hands out to me. And there was Grace, smiling and kissing me and asking me: "Why are you crying?"

At that point I thought I'd done it. Leaving everyone I loved behind me with a wave and a promise to see them at the finish, I thought I'd cracked it. I ran on, back along the highway -- the roar building to an astonishing pitch -- and into Blackfriars tunnel and an incline to the Victoria Embankment. As I bent into it the pain in my back came over me in a huge wave. For a panic-stricken moment I thought that I was going to be sick or black out. Breathing, concentrating, I emerged from the tunnel sandwiched in the middle of the staggering pack, to an immense crowd screaming encouragement. A sign told me I had only two and a half miles to go. Around me I could see runners smiling through their exhaustion and managing a final spurt. But all I could manage was a hobble, a limping half-walk, and then a walk -- biting my lips not to cry in front of all these people. My watch showed that I still had twenty minutes before five hours had passed. I walked as quickly as I could bear to, hoping to ease out the pain enough to pick up a run again, and started a distracted, frayed conversation with a similarly wrung-out runner alongside me.

At the corner of Big Ben I turned and saw, if it were possible, an even bigger crowd. I started running again, unable to bear the humiliation of walking in front of so many, despite being almost cross-eyed in pain. The route turned into St James Park and along Birdcage Walk, and while my mind was yelling at me to stop, it was also registering dimly that this was nearly the end. A sign said 800 metres and I nearly threw myself down on the floor at the thought of how far I still had to go. But then I turned and there was Buckingham Palace and the Mall and people were ten deep at the barricades, hanging off lampposts and thronged, waving, in the fountains and there was no way I could stop in front of them all, so I plodded on, weaving and bent, and there in front of me was another red arch like the one I had gone through nearly five hours ago. The clock on top of it said four hours and fifty-four minutes. I headed for it and was aware that I was smiling, that we were all smiling, and that it was nearly the end.

I crossed the finish line and raised my arms intending to make a victory gesture but found instead as I slowed to a final stop that I was clutching my head and weeping. Wiping my face with sticky hands, I followed lines of shattered runners submitting to the attentions and directions of race officials. A young man removed my time chip from my shoes while a woman strung a medal around my neck. In a daze, I collected my kit bag, slung it over my shoulder and started out into the crowds again to find my daughter.

Grace Under Pressure: Going The Distance as an Asperger's Mum is published by Piatkus in October 2012

Sophie

[This piece is taken from Sophie's blog, which you can read here: http://www.courage-is.blogspot.co.uk/]