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.

Getting People to Listen

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

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

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

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

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

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

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

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

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

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

By Robyn S

Raising awareness on WAAD

Monday 2 April saw people across the globe come together to celebrate World Autism Awareness Day (WAAD) and raise awareness of the condition. Among those tackling the subject on the airwaves and on the pages of newspapers, were many NAS Ambassadors and Champions.

Here's how you got involved - thanks everyone who took part!

Ambassadors go global

AAN Ambassador Robyn Steward and Jonathan Peckover, the eldest son of Ambassadors Sepi and David, joined a trans-atlantic panel discussion on the BBC World Service. The four-strong panel of adults with autism, including people from the US, discussed how autism affects their daily lives and gave advice for listeners in similar situations. It was a really positive discussion and really showed listeners what a valuable contribution people with autism can and do make to the global society. Well done Robyn and Jonathan! Listen here.

Daybreak appearance

AAN Ambassador, Sophie Walker, was filmed at home with her daughter, Grace, for a special WAAD feature for ITV Daybreak. Sophie talked about having a daughter with Asperger syndrome and how the condition can affect girls differently from boys. Sophie also talked about writing all about hers and Grace's experiences in a new book, which is out later this year. Watch Sophie on Daybreak (about 1 hour 45 minutes into the programme).

... Oh, and lets all keep our fingers crossed for Sophie, who takes on the London Marathon later this month!

Hitting the local radio waves

A whole load of Ambassadors and other awareness raisers got involved in their local area by taking part in discussions about autism and WAAD on their local radio stations. Ambassador, Jennifer Waddington took to the airwaves for an interview with BBC Radio WM and Ambassador, Victoria Thompson talked on BBC Radio Sussex and Surrey - both did a great job of describing autism and raising awareness for listeners. Why not listen to their interviews for yourself:

BBC Radio WM: Jennifer Waddington (about 1 hour 5 minutes into the programme)
BBC Radio Suseex & Surrey: Victoria Thompson (about 1 hour 52 minutes into the programme)

These are just a couple of the many discussions that took place on WAAD on local radio stations all across the UK.

Letters to editors

Lots and lots of people got involved by sending the template letter we prepared about WAAD to their local papers. So far we know that around 50 of you got involved by sending letters to your papers. There's been some great coverage and we are expecting to see more over the next few days.

Thanks again to everyone who took part on Monday and over the weekend, and a belated happy WAAD to you all!

What my mum means to me

Ahead of Mother's day, NAS Ambassador Robyn talks about the importance of being supported

My mum and dad really wanted a baby.

They tried many times and, in April 1986, my mum had a miscarriage. After her miscarriage, my mum continued to put on weight and went to the doctor, who told her she should go on a diet. The weight kept piling on and then she started throwing up.

She went back to the doctor and, to her surprise, discovered she was still pregnant. At 28 weeks, she went to the hospital and had a C section – I was born.

What my mum didn’t know is that she has two wombs. So after miscarrying my twin, I was still growing in her other womb, waiting to be born.

Having dealt with the loss of my twin, my mum and dad now had a critically ill baby to care for. I was in an intensive baby care unit for 10 weeks. They visited every day and had to take me back and forth for many years to come – every time I had so much as a cold.

My parents were overjoyed, and took pride and care in looking after me and meeting my needs.

But I didn't look at mum; I didn't snuggle against her when she fed me. In fact it seemed as though I was in my own world. So mum decided to play the guitar to me, and I started to pay attention. Essentially I was surrounded by a brick wall and my mum removed a brick so we could metaphorically shake hands.

As I continued with my 10 disabilities, I hit every developmental milestone vey late. I didn't talk at the right time and I signed using a special language called makaton. But my parents continued to love and accept me for the human being I was rather then the human being that perhaps someone else thought I should have been.

My parents were like warriors fighting for me. Mum learnt to use local services to my advantage, like the Nursery bus, where I could show the children how to dress up and the other activities I’d learnt about. Even though my social skills were impaired, I was able to find a place within my community.

My parents lived through me banging my head violently into the pavement; biting my arm; slamming my arm into doors; yelling; screaming; having tantrums in the supermarket. And yet they continued to love me and accept me for who I was. They continued to fight for me, putting pressure on the local education authority to meet my needs.

Finally when I was 8 a teacher took my Mum to one side. She said that, although the other children my age had behavioural problems, such as faeces smearing, biting and breaking kids arms, they were fine. But me? I was the problem.

Mum thought maybe I had autism, so I was referred to CAMHS and it took 3 years to get a diagnosis. With my new found diagnosis you would have expected my parents to be able to rest. But no! I was mainstreamed, which was a disaster. I would bite my arm, tantrum, scream yell and be very upset generally.

My parents accepted me when I walked around backwards pretending I was on film or speaking into a Dictaphone. Or shouting loudly at night on holiday to process what had happened that day. They accepted this and then decided to go camping instead.

When I moved to high school I got bullied and my parents had to explain it wasn’t my fault and fight against teachers who didn't understand. Yet they continued to love me for who I was. No matter how challenging my behaviour got.

When I was 13, I moved school and my Mum had to stop work due to ill health. So my dad was the only one going out to work and picking me up from school. But no matter how many hospital appointments my mum had, or how bad things were at school, or how much I was angry at the world and them, they still loved me and accepted me for who I was.

No matter what scenarios have happened within my life, my parents have continued to support me and be there accepting and loving me for who I was. After all this love and dedication they then had to defend themselves when the school mislabelled self harm as abuse!

I don’t know if my parents have missed out on life because they have me...

I don’t know what it would have been like if I wasn't on the spectrum…

… But I know my mum and didn't ever give up on me.

My parents’ lives were based around me. They helped me take part in every imaginable activity to find something I as good at and encouraged me to pursue it. They weren't bothered about exam results or staying in school, but were bothered that I became as independent as possible.

For me everyday I’m thankful for my Mum.

I don’t know what will happen when they die. Like 61% of parents of people on the spectrum, I’m sure my parents worry about what will happen when they die.

If I may advise from a child perspective:

1. Love and accept your kids or who they are

2. Find what they are good at and encourage them

3. Academic achievement is not the same as happiness

(I had no GCSEs and have been very successful. I travel around the world and speak nationally, most recently chairing the NAS Professionals conference. I’m only 25 - if that’s not success I don’t know what is!)

Robyn

You can read my blog at http://robynsteward.com/blog

First ever policy focus group kicks off with PIP

Back in January Sarah, Caroline, Daniel, Robyn, Carolann and Kirsty came together to discuss the Personal Independence Payment assessment and respond to the Government’s consultation questions.  Within two hours, we’d unpicked the pitfalls in the criteria, with the group giving our policy experts a thorough and refreshing take on what needs to change.  It was another example of how you guys really are the experts.  We’ll be using it to inform our response to the consultation. 

Don’t forget that you can have your say on this very issue.  Click here for more details on how to tell the Government directly what they need to do.