A Thpethial evening

Ria Lina.  Mother, Phd level scientist. Producer of West End cabaret. Performer. Comedian. Singer and musician.  In 2012, I personally added something else to her list of personal properties, all achieved before hear early 30’s.  Ria is on the spectrum.

When I first explained to Ria whom and what she was, I had no idea she would translate it into performance.  Silly me.  She proceeded to use the medium of stand up comedy to reflect on her new found reality.  But typically for these things, the motivation was due to a bad incident.

This year Ria’s joking about the difference between the term ‘special’ and the slang expression ‘Thpethial’ (said in a way that denoted low IQ and overall capacity) caused some controversy. Which caused Ria to think about why this had happened and to produce an entire show focused around the debate. 

We are led into a world of neurodiversity, something she explains she’d had no idea about, through the entertaining mediums of jokes (wry comments you have to react to) and deft use of a ukulele.  Ria is no ordinary woman commenting on a diagnosis.  Having previewed her show in the basement of the National Autistic Society, she took it to a prime Edinburgh Fringe venue and did a well received three week run. 

The concept and particularly the title have already attracted more criticism.  Ria’s show is not offensive at all, rather she tries to make sense of her new found reality – which actually has always been the case.  Who or what are you as someone of her accomplishments and ability when it turns out you personally are ‘special’?

One major point Ria makes is that in order to express the reality that we both share, you have to use phrases and terms reserved for people quite unlike us.  But so far, that is as much as our society has given us.  Ria’s show represents a start in bringing a whole new frame of reference to our society, and very funnily too.  She is to be congratulated in her first attempt to express, as nicely as possible, what it is like to find the answer to a question you never knew your family and yourself faced?  What are we?  Why are we the way we are?  

So don’t worry about the title.  Because ultimately Ria challenges that even the ‘special needs’ amongst us should accept that they are not so totally sacred and precious that they cannot be targets for comedy.  Far from it.  All through our ‘special’ lives, we people living with autism are constantly facing ridicule and the attempts of others to express how our reality can be perceived.  Ria tries to show that these taunts are also perfectly valid and universal perspectives.  

We who are relatively disabled cannot bury our heads in the politically correct sand, and pretend the rest of the world is not out there.  Ria’s show is ultimately an attempt to ‘get real’ about ourselves.  I think it works too.  I challenge anyone to find anything quite like it. 

Review by Paul Wady

Ria is performing 'Thpethial' on 12 and 14 November at The Lounge at Leicester Square Theatre. You can buy tickets here: http://leicestersquaretheatre.ticketsolve.com/shows/873503418/events

A social group for adults with Asperger Syndrome in Somerset receives funding boost

The Yeovil Pub Hub has been running successfully covering the South Somerset area for more than eight years but has had no funding for the last 18 months.

 

The group is run by three volunteers, Deborah Gingell, Tara Gibson and Martin Doyle and after funding was withdrawn they continued to run the group which holds monthly meetings at a pub in Yeovil.

 

With no money to organise nights out such as bowling or barbecues, the volunteers applied for a competition run by local newspaper The Western Gazette.

 

Called the “Wish For Cash” campaign, organised by the Yeovil Round Table, entrants had to write about their club/organisation and say why they needed some funding.

 

The Yeovil Pub Hub was selected as one of the 30 finalists and volunteers and members then spent the next four weeks actively campaigning in the local area to raise awareness of their group.

 

Voting vouchers printed in the paper had to be collected with local readers voting for which group they felt most deserved the cash.

 

Deborah said:

“We were up against some very stiff competition with some very deserving causes and groups and we were amazed to find we had been placed in the top 10.

 

“As a result of collecting hundreds of votes we were told we had been awarded £400 which is a massive amount of money for our group.

 

“Due to the publicity we received we have also been given a kind donation of a further £100 from Shape Financial based in Stoke-sub-Hamdon which will be spent wisely and provide some fun nights out for our members.”

 

The Yeovil Pub Hub is a fantastic group which is regularly attended by around 20 members who meet up to enjoy a drink or a meal and enjoy a social night out.

 

For many it is their only form of social contact and provides a friendly and supportive atmosphere where they can go out to the pub and know they will feel secure among friends.

 

Some of the members and volunteers were invited to attend a special ceremony where they were presented with a cheque by the chairman of Yeovil Round Table (pictured).

 

Deborah Gingell, Yeovil

MY LIFE AS AN ASPEY

Hello everyone, my name is Orlando Bolt; I am 25 years old from West London, England. I am a professional dancer, actor, model, singer and designer. I have Asperger’s Syndrome. I was diagnosed with the condition when I was 14 years old and life for me growing was a hard one and a challenge. I am writing this because I want to share my story to others that have Asperger’s and to parents/families or carers.

I would say that the beginning of my life was a strange, difficult time in my life. As a child my world was different and interesting in my head. My world which I call now “Orlandoland” was my security and sanctuary. My family are the best. There is so much love and fun. My mum and dad gave me so much love and support growing up that I felt safe. I was very close with my baby brother, grandparents, cousins, aunties and uncles that things didn’t seem so bad and because of that I had a joyful and fun childhood.

But outside of the family unit, I felt alone, insecure and afraid. I felt like the whole world was my enemy and I found it difficult to make friends. Only certain adults I could speak to and tell them my fears.

I love performing arts and I started doing it when I was around six. I loved watching Michael and Janet Jackson when I grew up and I see Janet as a big inspiration to be. Her music has helped me through so many difficult times, struggles and obstacles. My mum enrolled me at Sylvia Young’s Drama School in 1992 on a Saturday doing Tap dance and speech therapy to help me with my speaking. Performing for me was a god send and I could express myself and be a star, forgetting those insecurities I had.

Through high school,l which was one of the most difficult times in my life, I put my energy into Art which is my natural talents and drama, music and dance.

After seeing Janet Jackson MTV ICON show, I wanted to be a performer in the future and I was determined to make that dream of mine happen.

Getting a diagnosis was hard - I remember as a kid going to a counselling session with my mum and not understanding why I was there, why I had to go and not my brother. I felt different and worthless, like I was a moron. I was frightened and angry. I hated who I was and with other tough and difficult things I was facing in my life at that moment, I kept asking myself, why is this happening to me, why is God punishing me. That’s when I started to rebel. Other kids influenced me to not good places and fell off the tracks of positive thoughts.

I understood now why I was being judged and treated differently by others and began closing into a shell. Luckily for me, the only people I could rely on or talk to was my family. My older cousins are mostly girls and they are like my older sisters and I felt comfortable talking to them about anything.

By the time I was 18,, I had more of any understanding about society and being an adult and I felt it was time to do what made me feel happy. I told my mum and dad that I wanted to performing arts and not art and design, it doesn’t make me happy. That rebellious side began to evolve even more. So I enrolled at WAC Performing Arts and Media College - it was a different experience from any other I have ever faced. I knew that if I wanted to do my own thing, I had to speak up and face my fears. I did drama and singing and for the first time, I found somewhere where I felt safe but could express myself. I loved it and I would go there without fail

Whilst I was at WAC, there were different projects for different people. One of the ones that were there was Wonder WAC, which provided projects for young people with Asperger’s and Autism throughout the spectrum.The day of my first project - I was scared and didn’t know what to expect. I was paired up with another worker on the trip to take care of a young Autistic boy over the week. He seemed as fearful  of me as I was scared of him, but after a while, I felt comfortable and this autistic vibe helped me understand him. After the trip, I wanted to know more about Asperger’s Syndrome and the aspects of it.

My dad sent me to this autistic workshop in Islington, North London, called Prospects which was run by the National Autistic Society. I met my social worker called Justin; He was nice, friendly, made bad jokes and had a real passion for me to succeed. In the beginning, Justin and I worked one-on-one to help me find employment after I quit my job. Through the sessions, I began to develop life skills and employment advice. 

I asked Justin if I could work in a special school for Autistic people, he said he would help me get my request. He thought it would be good for me. I did a work experience at the Acton Day Centre in West London for a week and experienced what Autistic and Asperger’s people who weren’t as independent as me did an on daily basis.

I found a new found respect for Autistic/Asperger’s people as well as carers and support workers. These experiences through that whole year changed my life.

Now that I had an understanding of what Asperger’s Syndrome was about and how others lived their lives, I had to fight and drive forward.. In 2007, I began starring in productions such as the musical Dreamgirls, Jim Cartwright’s play Road and feature in music videos and feature films like Doomsday and Franklyn. My parts weren’t big but I was starting out and loved every moment of it. I felt that I needed to do professional training even though I did so many short courses. If I look in my folder of certificates I have probably 10 of them woooooooooooooowwwwwww!!!!!!!

I went back to WAC on its newly accredited National Diploma course in Musical Theatre.

I was thrown into the deep end as this was training I’ve never experienced before but me being the fighter that I am, I didn’t want any hand outs or special treatment. I wanted to be a normal student and trust me I got my licks. The course had a lot of financial troubles where I had to stop and take a year out. I didn’t quit performing, I just continued and began going to open-mic nights and finding other productions to get involved with. In that time, I began meeting more people than I probably I have ever met in my life. I started promoting myself in the industry through Facebook and Twitter.

I remember doing some productions on the diploma and the feedback was amazing that I was inspiring a lot of young boys to become somebody, I didn’t really acknowledge it, and I thought people were being nice to be nice.

Now that I have finished my diploma, I have been in many productions including the London 2012 Paralympic Opening Ceremony as a dancer. Life for me is so good right now and I still work with Autistic people on projects.

I write this story as how I overcame obstacles and life experiences of what a positive outcome Asperger’s has and to be honest the lucky ones are those children who have been diagnosed very early, they have a better chance than I did. With the right people in your life, you can make mistakes and not feel bad. I just want to thank all my beautiful family and friends and enemies for making me stronger and excel into becoming a strong and happy individual.

IF I CAN DO IT, ANYBODY CAN DO IT, YOU LIVE ONCE, MAKE SURE YOU HAVE A LIFE, IT ONLY HAPPENS ONCE. Xxxx

Orlando Bolt

                                    The End.

Karen's campaigning in Cheshire East

SEN Provision for children without a statement

In March 2012 we had a meeting with Child and Adolescent Mental Health Services (CAMHS) to discuss next steps for our son as we had been told about Individual Pupil Funding (IPF) as a stepping stone to a statement. Whilst at the meeting it became apparent that IPF was ending the following April so they suggested that we go for a statement.

You can imagine my surprise then, when in February 2013 a parent posted a letter on our parents/carers forum on Facebook that she had received from Cheshire East informing them that IPF was ending in the April 2013  –  talk about short notice! I was shocked that the council had waited until February to notify parents when CAMHS obviously knew last year!

I have recently discovered that IPF was a Cheshire East initiative to cut down on the wait for pupils to access funding for support, so for it to have stopped so suddenly is outrageous.

The amount of posts on the forum was phenomenal; I knew I needed to act. So as part of my role as an Ambassador for The National Autistic Society, I contacted our local MP.

Luckily our MP has been very supportive of parents with children with Special Educational Needs (SEN), especially those with Autism. In my letter I included comments from the forum so that he could see what impact the cuts were having on everyone, not just children but also teaching assistants losing their jobs.

He was fully behind our concerns and I received a letter reassuring me that as part of the revised SEN Code of Practice it will have to show how they are going to meet the needs of children who don't require an Education and Health Care Plan.

Funding

But following a letter from my son's school, it became apparent that there was a funding issue which also needed to be addressed. The letter explained how the Government state that schools receive on average £10,000 which is made up of basic entitlement and additional pupil funding for children identified as SEN, but in reality the primary school’s allocation is £5,216.55.

Cheshire East is one of the most poorly-funded authorities in the country which means that SEN allocation is much lower than other authorities. I wanted to know why and get more information for parents.

So I got in touch with our MP again with the concerns over the cuts in funding and how it will affect children without a statement. He replied with the following attached reply from our Director of Children, Families and Adults:

“In order to attempt to further mitigate some of the funding pressures upon schools, I have taken the decision to release an additional £2m for SEN from the DSG contingency. Whilst this in itself does not eradicate the current pressures experienced, it does reduce some of the pressures and ensures that schools will have the SEN resources to meet the needs of those pupils with SEN with Statements.”

This was really good news but we were still concerned about the pupils without statements who have SEN, so we were encouraged to receive another letter from our MP. This time he said that he was organising a meeting with the Minister of State for Schools, Cheshire East Council and another MP to discuss the funding issues in Cheshire.

In the meantime I tried to encourage parents to be patient as they were eager to do protests about what was happening. I reassured them that while going down this route may take time, it might have a better outcome. Should this avenue fail, we could then involve media and protests.

I was then invited to attend a meeting with our MP, accompanied by another parent who was also concerned about these issues. He was pleased to inform us that after the meeting with the Minister and others, they had agreed to focus on three main areas which will hopefully help.

These are:

1) Autism school provision – they are now pushing for an answer from the Department for Education on the go-ahead
2) Capital funding for post-16 to be made available
3) Transitional arrangement funding for post-16

We were really pleased about this but there were other issues unresolved, such as job losses and cuts in funding for children with SEN without statements, the lack of information from Cheshire East Council and schools in general and the need to push for a meeting. He was fully behind this and was surprised that Cheshire East Council hadn't been forthcoming in providing information.

On the back of this, I’m now putting in a request for a meeting and listing the issues that he could try and help us with.

Making a difference as a Councillor

It has been over three weeks since I was officially elected as Councillor in South Heaton, in Newcastle. And what an exciting and busy time it’s been over the last few months, with a well-fought election campaign and many hours of pounding the streets and meeting people beforehand to gain the welcomed success achieved on 25 April. Not least grasping the opportunity to raise awareness for The National Autistic Society in personal campaign literature along the way. Every little helps!

It was great to be out and about meeting residents in the ward and feeling able to share my personal story and purpose for wanting to become involved in local politics in the city. As many families and individuals know there have been huge amounts of excellent work undertaken up and down the country by the NAS, other charities and public sector organisations over the years to support those individuals and their families living with autism, but as with all things more can be done to improve things such as levels of awareness, access to services, therapies, pathways to diagnosis, training for staff and real choice, to name but a few. The approach to all of the aforementioned is ever more important in the current economic climate where funding is limited and organisations are feeling the pressure.

Running for Council was a natural step for me personally, and one where I felt I could make my best contribution, having been inspired at the NAS training event in London by speakers, NAS staff and fellow Ambassadors. Being able to make a positive impact and contribution to improve the lives of people and families living with autism was the way I hoped to go forward and so the journey began.

Since being elected I’ve managed to take part in a ‘round the table discussion’ along with others about ‘Making Rights a Reality for Disabled People’ meeting Liam Byrne MP and Anne McGuire MP. It feels rewarding to see that the hard work to gain election success has provided the opportunity to feed into such discussion and perhaps even future policy. It is important to me that the views of real people, tackling and facing issues on a daily basis are shared with those who can make things happen! Even in the smallest steps.

For me this is just the beginning of a two year journey as Councillor (more beyond if I’m re-elected) to progress work towards a better life for all residents in the ward and across the city –impacting, challenging and debating where I can across health, social care and education and other services to improve quality and choice. As part of that work remit I intend to keep the vision of individuals and families in mind as I evolve into my new role and take on the great responsibility of serving the public.

Denise

Raising Awareness of iss facing those with autism from Black and Ethnic Minority (BME) Communities

Campaigning is a crucial part of raising awareness. Being on the spectrum or being the carer of someone on the spectrum is an experience that most people find difficult to comprehend. Therefore as difficult as it may be, we need to be the driving force behind campaigns that highlight autism and how it affects everyone around us.

On 12 February, the NAS, with the support of Diane Abbot, MP, launched a new project to raise awareness of the specific issues facing those with autism from Black and Ethnic Minority (BME) Communities. This was a one of a kind event which had a fantastic turnout and achieved attendance from MPs and Peers from across the political spectrum.

So why have a BME specific campaign?

In a report by NAS (Missing out, 2007) it found that 24% of BME children had been excluded from schools, while 78% said their local authority did not provide support to their children during exclusion and more than half of parents from ethnic minorities whose children have autism did not have a choice of school. BME parents were also “significantly” less satisfied with their child’s academic and social progress compared to their white counterparts. This painted a stark picture of access to educational services within the BME autism community.

Seven years on and these issues are still pertinent; more so, given that resources are rapidly declining and unfortunately those who demand services are more likely to gain access to them.

There are clear issues which highlight the plight of many people with autism within the BME community. Firstly, evidence about the prevalence of autism in various communities and its impact on family life is inconsistent. Evidence has highlighted that communities may not be aware of autism, their rights and relevant services. Finally, services that are available do not always meet the needs of these families.

For me personally, I have never thought about the link between ethnicity and disability and how a substantial amount of the autism community is currently facing double discrimination. I suppose this is more of a reflection of how insular the fight becomes for you on a daily basis that you lose sight of the bigger picture. Going to the event, was an opportunity for me to think about the greater impact current changes are, and most certainly will be, having on all of us. If members within our community are not able to access even the most basic help with regards to finding much needed support then we clearly are failing in our own roles as advocates and champions. I hope this event is one of many that will pave the way for highlighting this issue more and make accessibility to information that little bit easier.

I am delighted that we were able to get a substantial presence for autism within parliament and I am extremely hopeful that it will provide some much needed support to our fringe members who do on a daily basis feel even more marginalised.

PigPen tribute for Gabriel

PigPen held it’s first show in 9 months at the end of February in memory of it’s co-founder Gabriel Hardisty-Miller who passed away last year. It was held at the spiritual home of PigPen- The Macbeth, Hoxton. If you’ve been to The Macbeth and you’ve been to PigPen, you’ll know why.

Gabriel was the brilliant taste-maker and curator behind PigPen. He was a non-verbal young man with autism. During the four years of PigPen he chose a plethora of electric and excellent acts using his yes/no comm device. He was a tireless campaigner with the National Autistic Society, a role model for raising awareness and encouraging people to think differently about disability.

It was only fitting that all profits form the PigPen Memorial Show went to the NAS.

The proceedings kicked off with a poignant procession from Gabriel’s estate down the road to the Macbeth. The procession was part of the Dron Festival at Hundred Years Gallery, Gabriel’s famous PigPen throne (that he always sat on during the shows) was decorated with garlands of flowers and lights and processed with bell ringing family and friends.



From here the marathon of performances began. The first half of the show saw PP stalwarts Eddie Halliday, Robyn Steward, Bram Arnold, Captain Spoon and Charlotte Young take to the stage for acoustic and performance art sessions. Then followed a beautiful tribute to Gabriel by jazz singer Sarah Niles with Rob Grundel on keys. For anyone that remembers the Roy Davies Jr, Peven Everett dance floor classic- ‘Gabriel’, Sarah did the most moving version of this.

As ever, DJ’s Brian Turner (AKA Bram Arnold) and Good Grief kept the crowd bubbling in between acts with a trademark blend of soul, indie pop and odd music from their varied record collection. The vegan chilli ran out within the first couple of hours and there was the latest edition of ‘Snizz Comics’ by myself.

Christine Binnie (with help from Tom Madders of the NAS) ran the PigePen Art Raffle with gusto. With such a fantastic array of prizes it’s not surprising this alone raised £250. We had artworks by Robyn Steward, Lewis Heriz, Martin Kingdom and myself, Dean Atta’s debut poetry collection plus a £150 meal voucher at a fancy restaurant up for grabs. Needless to say, all prizes went to very happy winners!

The first half of the show ended with one of South London’s finest voices and began with the same- Mr Joel Culpepper (one to watch people), following him PigPen legend with a capital L- Tim Ten Yen, poet extraordinaire Dean Atta and despite motor troubles- Honkeyfinger with their trippy, sweltering blend of psych -swamp rock. How could we possibly fit in anymore you say? Well we did.

United Vibrations opened their set with their beautiful and moving piece ‘Don’t Be Sad’ and continued to uplift us all in a way only UV could. Finally DJ/Producer Noel Eeteks (who grew up in the house next door to Gabriel) took the helm on the ones and twos and saw PigPen well into the night.

Not only was this a very special night that managed to raise £520.60 in Gabriel’s name, it was also a show that saw Gabriel very much present. The acts he chose and nights he curated were an extension of his unique personality, it felt as though the PigPen Memorial Show was as close as we could get to having him with us again. It was a blast from an entertainment point of view, also spiritual to feel his presence again. A huge thanks to all involved- far too many to mention.

On a final note, many people have been asking me on the future of PigPen and Snizz comics, all I can say for now is watch this space….

Ben Connors

David's Art Exhibition

I began painting as a pastime in late 2006 so I had something to do in the run to the Christmas of that year after what had been a difficult year.

I began painting on Watercolour paper and even managed to do some paintings for my family as Christmas presents. Within 6 months I had "progressed" to painting on canvas using pallet knives in addition to the trusty paintbrush.  I was mainly doing abstract paintings as I was finding my way as my art skills developed.  In addition to the paintings I was attended free art classes including Jewelry Making & Pottery, skills at which I also became very good at. 

I was making jewelry for friends and members of my own family when it came to Birthdays and Christmas.

In 2007/2008? I held my first art exhibition which was covered by SLC in their newsletter at the time.  The exhibition was held at BBC Radio Lancashire and we appeared on "Gilly in the Afternoon" hosted by BBC Radio Lancashire Presenter John "Gilly" Gilmore and we discussed my paintings & Autism.  In the following years I displayed my paintings whenever the opportunity arose at various events & locations like Worden Arts Centre when I was involved with the now (sadly) defunct Shaw Trust Artworks.

In 2011 I sold a canvas painting of a church to a friend in Manchester.

When Pop Group Oasis released the music video "The Masterplan" I became interested & inspired in the paintings of L.S.Lowry who became famous for his paintings of industrial landscapes and of course "matchstalk men and matchstalk cats & dogs".  I began doing industrial landscapes and paintings of old mills & houses using an old maths drawing set and acrylic paints.  Whenever I was out & about I sometimes took pictures of interesting buildings & landscapes and these became a genesis for some paintings, even though I used a bit of my own artistic licence and continued to do some abstract paintings.  I'm a regular visitor to the Lowry Gallery on Salford Quays, Manchester.

Before Christmas 2012 I saw a chance to display my canvasses at Chorley Library and they agreed.  The exhibition runs from the 3rd - 16th January but could run until the 31st January.

All the paintings are for sale.

David Robinson
(Chorley)

Maz's fundraising diary

With my 40^th birthday approaching and feeling slightly dubious, I decided I wanted to do something that could make a difference. Something with depth and worthwhile. Asperger syndrome is something that is close to my heart and I wanted to raise awareness and funds for children on the autism spectrum.

My idea was to gather some close friends and organise a trek in Snowdonia on my birthday. With two months to plan the trip, I contacted The National Autistic Society and they kindly supported me with ideas and importantly with helping receive press coverage. The trek was a success and raised over £500.



Maz and his friends on their Snowdonia trek

With the first event under my belt, I didn’t want to stop there, so I decided to carry on and organise more activities. I set up my own charity page on various social networks to help raise more awareness of autism. My next mission was for me and a group of friends to visit ALL 20 Premier League clubs in just two days!

Although there are so many children on the spectrum who love to play and watch football, there are not many football coaching schemes suitable for them. Local football clubs are often unable to cater for young people with a disability who want to develop their footballing skills to get more enjoyment from the game, without necessarily aspiring to become professional. This means that many children are missing out on the opportunities that are open to non-disabled children.

We received some great responses from clubs such as Chelsea and Spurs, who invited us for exclusive VIP days at their grounds!

A VIP tour of White Hart Lane, Spurs’ ground

After visiting all the clubs in 33 hours, I then arranged an Auction Party to sell all the memorabilia we had collected on our tour. The items included a signed Spurs top, signed Chelsea football and a signed Pelé top!

On the night we managed to raise over £3000 and had a great time increasing awareness of autism.

Here is to more events in 2013!

Maz Ataie

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.

In memory of Gabriel

A few weeks back, we received the incredibly sad news that Gabriel Hardisty-Miller, an ambassador and long-term campaigner for the NAS, had died.

Our official tribute can be found here on the NAS website, alongside a beautiful poem written for Gabriel's memorial service. We were also kindly invited to pay tribute to Gabriel at his memorial. Here is what we said:

I'd like to start by thanking Gabriel, for everything he has done as an incredible campaigner and ambassador for our charity.

One of the great challenges facing our charity lies in fighting public ignorance and challenging preconceptions and prejudices about what people with autism can and can’t do – what they can and can’t achieve. What Gabriel did in his short life to help us to do exactly that cannot be overstated.

One of the great joys about Gabriel was in watching him meet and interact with people for the first time. A young autistic guy, in a wheelchair, sometimes snizzing, communicating unconventionally with his yes/no device, people often didn’t know what to make of him at first… yet, those who did meet him quickly found out he’s sharp as hell, funny, quick-witted, sociable, creative, stylish, ambitious, and self-assured. By simply being himself and allowing others to get to know him, he was able to challenge attitudes and presumptions about people with autism more effectively and succinctly than I or my colleagues ever will be able to.

Gabriel, along with his great friend Ben, have been peerless ambassadors for the NAS over the past few years. They’ve made hilarious videos and blogged for us, spoken at events and meetings, and met some of the most senior politicians. Gabriel’s story was recently told in our 50^th anniversary report, published just a couple of months ago. And he has also featured in the most over-used photo the NAS has ever taken, celebrating the passing of the Autism Act, which he campaigned for, on Waterloo Bridge. 

I remember one particular meeting when Gabriel was on especially good form. He and Ben were being filmed interviewing then Minister for Care Services, Phil Hope. After showing him the latest Snizz Up comic and asking him some searching questions, Mr Hope – a well-meaning but rather goofy MP – at first responded with a long and incredibly boring monologue about his social care reform plans. A visibly unimpressed Gabriel, who was making everyone laugh with a few brilliantly timed “No”s on his device, had Phil a bit rattled. So, in a bizarre panic, the minister tried to win Gabriel back over by reaching for some juggling balls, and having a juggle. As many of you will know, Gabriel absolutely hates juggling. So the Minister’s well-intentioned distraction technique was met with a prolonged and multiple bashing of the “NO!” button.. Mr Hope will have been lobbied countless times that year, but I doubt any of his other meetings will have left the impression on him that Gabriel did that day.

When we passed a card around the office when we found out the incredibly sad news that Gabriel had died, I think almost every comment from staff included the word ‘inspiring’. It can be an overused word, but those of us who work at the NAS know how true a word it is to describe Gabriel. At the NAS we hear from people with autism, from parents and family members, every day. Often they are worried about what the future holds for them or their children; sometimes nervous about what kind of life they will have – what they will achieve.

Gabriel, with the support of Mary, Ben and the rest of his entourage, has inspired people to think bigger about what they can do with their lives. Inspired people to get creative. To do more. Not to be told what they can and can’t do. To live life to the full.

Personally, I’ll remember Gabriel with a big smile – as someone with a great sense of fun, who could curate a damn good gig night, whose dress-sense I envied, who could down a half pint of shandy with a straw in 6 seconds flat, and whose joyous snizzing would put a grin on the face of whole room of people.

Losing Gabriel is of course an unspeakably sad loss to his family and his many friends. And the autism community will mourn the loss of a great champion, campaigner and role-model for others with autism. But through what he has achieved – and for a 25 year-old, let’s never lose sight of just how much that is – his legacy will be an enormous one: a non-verbal young man who spoke for thousands.

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.