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.

"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

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 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

Michele tells it how it is to MPs!

I am proud and honoured to have been chosen as an ambassador for the National Autistic Society and I hope I can help to develop further awareness of autism in all its many shapes and guises and give a voice to other parents who may not, for whatever reason, be able to speak out or stand up for themselves and their children.

My 10 year old son Dylan is gorgeous, funny, smart, witty, crafty, mischievious, loving and has ADHD and high-functioning autism.

He is also prone to regular meltdowns, agressive outbursts, can turn the air blue when he's 'in one' and has been know to tip over tables, throw pencil pots, bite teachers, try to jump out of windows, break or throw any object which comes to hand and, on two occasions (the other just last week!) do a runner from school only to be found my the police. Scary stuff I can tell you!

So I know a bit about working with schools and teachers and trying to ensure my son gets the support he needs in mainstream primary to thrive and be happy.

It's not been easy. We've had many battles along the way but the progress we have all made (Dylan, school and my ex-husband and I) has been phenomenal.

A turning point, I believe, was when I explained to the head teacher that none of this was personal - but if I didn't fight for my son who else would?

So, with my own experiences to share, I joined the team from the National Autistic Society a couple of weeks back to address Members of Parliament at the House of Commons. Wow! What an experience that was. If you've never been inside Westminster before and get a chance to, do take it. What a stunning building! So much history!

I was joined by a fellow parent, some very impressive educators and two fantastic young people on the spectrum and we were given the chance to share our thoughts and answer MP's questions about our experiences.

For many this could be a daunting experience but it seems I was gifted with a big gob so talking to people is never an issue for me! And I hope that my thoughts and views on education and autism (which I know echo those of the many wonderful friends I have made through my local autism support group) might help to shape a better system for our children who deserve the same rights to a good and happy and secure education and childhood as any other.

It was a real privilege to be asked and I have to say one of the proudest moments of my life.