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

Dads in Scotland raise awareness

With Father Day (17 June) just around the corner, Ambassador dads in Scotland have been raising awareness of autism.   

Glyn Morris from Moray told us his experiences of caring for his 13 year old son Gregor who has autism

“Being a father of a child with autism can be challenging, but also incredibly rewarding. If another dad happens to drop into conversation that his child is on the spectrum, you suddenly feel an overwhelming connection. It’s like finding a long lost brother. Our children see the world very differently and every day we do our very best to support them and see the world through their eyes.

I would like all Moray fathers of children with autism to know that you are not alone. Many dads are experiencing similar challenges every day. Getting the right support at the right time can be a real struggle, but it is out there. 

At first, Gregor seemed to develop as expected. He was hitting all his milestones. He could say ‘Da’ – which is a fantastic moment for any father. Then suddenly, around 3, he started to regress. He lost his ability for speech and hasn’t said ‘Da’ since. 

At one stage he was getting up over 20 times in the night. Many people with autism rely on predictable routines to help make sense of the world, and Gregor would find changes in his routine distressing and disorientating. There would be 'meltdowns' in the car if we continued driving and didn’t turn off into a relation’s home as expected. Gregor also experiences huge sensory challenges and couldn't stand to walk on sand or even grass in bare feet. A simple thing like a visit to the hairdresser’s was torture. Loud noises were unbearably painful and disorientating.

These days, Gregor is a much happier, more laidback teenager. I couldn’t be prouder of the way Gregor works every day to overcome the challenges of his condition.  Some people with autism find socialising very challenging and disorientating, so we are very lucky that Gregor absolutely loves meeting new people and spending time with friends and family. His smiles and laughter are just infectious, and he has such a positive effect on everyone he meets.  He loves swimming, horse riding, car trips and anything with wheels attached. He has an extraordinary photographic memory and a fascination with numbers and jigsaws.

The right support at the right time at school, and calm perseverance at home, has made a huge, positive impact on Gregor’s quality of life.  So much credit has to go to my wife, Jennifer, who is not just a fantastic mum, but also the most patient and thoughtful person I know.

Gregor has very little speech, and mainly communicates by making vowel sounds. He has limited muscle control and movement and still needs constant care, but he has shown amazing progress.  He rarely wakes up in the night these days, and copes very well with changes and unpredictability when they are explained to him in advance.

Being a father of a child with autism does turn your world upside down but, I honestly, hand on my heart; feel incredibly privileged to be Gregor’s dad as he is such an amazing individual.” 

Ambassadors Kevin Foley, James Parker and Norman Gray also told their stories to the local papers.  

SEN campaigning progress for Victoria

I'm Victoria and I joined the AAN in November last year.  I live in Hurstpierpoint, with my husband Ged and our 3 children, Joseph, Daisy and Archie.  Joseph is 7 and he has autism.  I've been asked by the AAN to say a bit about what I've been up to since November, it would be great to hear your experiences as well - it's inspiring to think there's a group of us out there working away for autism.

Since becoming an ambassador, I have been campaigning on the Government's proposed reform to the Special Educational Needs and Disability system - change is potentially good, but we need to make sure the Government gets it right for people whose lives are affected by autism.

At the end of last year, I finally got to meet my MP at his surgery.  I had been in contact with his office on the SEND reforms since the summer, but it took until December for us to meet.  My MP is a minister and it was initially hard to get his attention.  Tenacity proved to be the key, as did trying to forge some kind of relationship with his office (they got to know me quite well in the end!), although I admit, it was sometimes hard to balance persistance with politeness...!

 

Before the meeting I took some advice from the AAN and got myself prepared - I'd never met an MP before and I was nervous and keen to make sure I did a good job.  The best bit of advice I got was to write a short note which, would detail all the issues I wanted to raise and the points I wanted my MP to action after we had met.  I took this note with me and used it to refer back to and keep the meeting on track.  I also emailed a copy to my MP's secretary before the meeting, she printed it out and he was able to read in a little about the issues I wanted to discuss - it also gave him something to keep in hard copy to remember me by!  For moral support but also to add impact, I brought a very good friend of mine to the meeting.  Her family life is very similar to mine and together we were able to emphasise both the significance and prevalence of our common experience.

The meeting went well.  It seems to me that the Green Paper provides a great opportunity to improve the provision of services for local people affected by autism and it turns out that my MP has had lots of other constituents asking for his help and has become very sympathetic.  I told him about my experiences, how complicated life can be for Joseph and how we have struggled for diagnosis and to access services.  I also outlined the main Green Paper proposals and how the reforms could, in my opinion, best serve the interests of those affected by autism.  I was amazed by his interest and knowledge, we had a good chat about the problems we face and he listened well. At the end of our meeting, he agreed to coordinate a round table of parents and families, health care and education professionals, in the first of what we're hoping will be a series of 'autism summits', which will take place at Arundel Town Hall on Friday 29 June. 

The idea of the 'autism summit' is to bring together all kinds of people who have a connection with autism - mental health teams, social workers, teachers, Children's Services, people with autism, parents and charities - for round table discussion and information sharing.  We hope that as a result of these meetings, my MP will be able to feed back some really useful information to Government, as it progresses the Green Paper.  West Sussex is also a Green Paper Pathfinder area, so it's going to be a really useful forum to find out how the Pathfinder Team has got on.  We also hope that these sessions will help improve local services for those affected by autism, by highlighting what is being done and where gaps remain.  It will also be a chance for parents to share experiences.  The 'autism summit' will include 5 speakers - representatives from social services, mental health services, the charity Autism Sussex and members of the West Sussex County Council Pathfinder team.  I'll be there representing the families and the NAS and I think someone from the NAS will try to make it down.  There'll be a Q&A session after the speakers have finished and I'm hoping to see lots of people chipping in from our local NAS branch in Worthing.

After a difficult start, I've become really impressed with the commitment that my MP has shown to the issues I raised and, about a year after I first contacted his office, I feel like something might finally result.  I hope the summit is a success - I've never done anything like this before so if any of you have advice or ideas, they'd be very gratefully recieved!  Fingers crossed for 29 June.  I'll keep you posted."

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. 

Ambassador appearance on C4 News!

Autism Action Network Ambassador, Sophie Walker, was interviewed on Channel 4 News last night about the proposed legislation to change the SEN system.

She did an absolutely fantastic job. It's only a shame the Minister, Sarah Teather, pulled out at the last minute so Sophie couldn't put her points directly to her. She'll no doubt have watched it though, and will have plenty of food for thought...

Very well done, Sophie!

You can see the footage in the link below, 43 minutes into the show.

http://www.channel4.com/programmes/channel-4-news/4od

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.