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:
Friday, 31 August 2012
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:
Wednesday, 29 August 2012
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 firstname.lastname@example.org.
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 email@example.com.
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 firstname.lastname@example.org who can put you in touch with the right person.
Wednesday, 22 August 2012
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
By Marco G
Thursday, 9 August 2012
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.
Tuesday, 7 August 2012
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.
Monday, 6 August 2012
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.
Thursday, 2 August 2012
When the hype first started on the TV about getting tickets for the Olympic Opening Ceremony, I gave little thought to the logistics. To be honest, I never thought I stood a chance to even GET a ticket. So when the news came that me and my son had been successful I was overjoyed - then the reality of getting there and watching the ceremony started to sink in!
I have Asperger syndrome and my ten-year-old son has autism, so it was no mean feat to work out how to get both him AND me from Lincolnshire to the Olympic Park. Moreover, to prepare my son - who cannot sit through an assembly of 80 children at his school for 20 minutes - to sit through an opening ceremony with 80,000 other people for four hours!
To look at the positives: I am no spring chicken at 51 and, with a lack of support, I have had to work out my own coping strategies over the years. This put me at a distinct advantage for the ceremony as I knew what difficulties my son might face. I can read him far better than someone who is not on the spectrum. We have also had a few trial runs with trips to theme parks and so on, so I know his strengths and weaknesses.
All in all, the preparation was easy. We had LOTS of pictures to look over in advance - thank heavens for Google Earth! It makes roads so much more accessible for us as all the buildings and paraphernalia are in view! Preparing for an 80,000 strong crowd was not so easy. We did look at images of groups of people and did multiplication and mathematics challenges (he loves maths) to prepare for the number of people. But there was one major issue I was concerned about: the queues.
The day came and we set off in good spirits. We were armed with plenty of good cueing cards, visual aids, ear defenders, space putty and his trusty Pac Man ball. I festooned him with warning signs explaining autism, an autism alert card and a badge which clearly stated he had trouble queuing and to please be patient. I admit I felt guilty and wondered why we should have to "advertise" our difficulties to the world. But for the sake of peace we took the easy option. All went well, the train journey was fine and the changes were fine. When we arrived we got on a London bus. THEN it broke down. I was absolutely furious when a person turned to Nathaniel and said "oh look, you broke the bus".
The atomic-scale meltdown that followed felt as though it was being witnessed by the whole of London as they stopped and stared at my poor little man, who was so sure he had broken the bus. He was devastated to hear that he would not make it to the Olympics and that it was all his fault. His head raced away with the worry he was now in trouble and would not be allowed in, and that he wouldn’t ever be allowed on another bus! Nothing was going to appease him as he melted down onto the pavement, resorting to head banging and self harming as he insisted that things were entirely his fault as he had broken the bus. No one and nothing could communicate anything different to him. 45 minutes later I thought we were heading for a record meltdown, but finally he was calm enough to communicate with again and so, assured he did NOT break the bus, he was NOT in trouble and WAS going to the Olympics, we headed off once more.
Arrival at the Olympic Stadium was met with shrieks of glee from my little man as we headed in. It is at this point I have to thank the wonderful volunteers at the site. They immediately identified us and sent us to a separate walkway where it was quiet, uncrowded and peaceful, so we were able to walk calmly up to the security checks. Once again we were welcomed and the staff and soldiers kept Nathaniel well entertained and happy - he did not even realise he was going through airport-style security. WELL DONE GUYS AND GALS!
From there we headed for food. Therein we hit a problem as there was not a single gluten-free food stall on site. Whilst there was a huge variety of food from around the world, I was thankful that we had been allowed to bring our own pre-packed food and snacks with us.
The time had come to enter the stadium. So far we had not been crowded or needed to queue, and as before we were ushered in quickly. Nathaniel had the task of finding the right number on the pillars to match our tickets, which he enjoyed doing. Our seats were at the back, with lots of space either side so we were not crowded in. He had light panels to play with which he waved and made pretty colours. And so we settled down for the show.
Drummers came and stood behind us and we got some lovely pictures of Nathaniel with them, but nothing could have prepared me for the feeling, let alone the noise, of 2000 drums, most of which were less than two feet away from us! Poor Nathaniel, ear defenders or not, he dived under the seat, hid under his blanket and wailed! I felt so helpless! But all was not lost. He came out, as they went to the centre of the stadium, pulled out his binoculars and started dancing! He later said the industrial section of the ceremony was his favourite part, especially the drums.
At no point was Nathaniel bored. I think the ceremony did Britain proud. We watched, we cried, we waved and danced. Nathaniel even waved all the flags he could when Team GB came in and shouted his head off, “GO GB! GO GB!” Then it was time to head off and although it was one o’clock in the morning, he was still full of life, singing and dancing.
I know autism covers a huge spectrum and sometimes it feels we are doing the right thing to protect our little ones from things as they may not accept it, or understand. However, they are resilient human beings and can surprise us as to what they can cope with. Given the right help and support, and especially the right amount of preparation work, they can enjoy a full and fruitful life and have wonderful experiences.
I am so glad I took Nathaniel to the Opening Ceremony of the Olympic Games. He has come home with a story to tell of a wonderful adventure, amazing sights and sounds and memories he will treasure for all time. Apart from the incident on the bus (which thankfully Nathaniel has forgotten), all went well and I was a very proud mum.
So do not be put off by any event. Just plan it and prepare for it and go for it! Your little ones will thank you! And the feeling you get is beyond description. I know the feeling I got when I saw my little man was so precious. Nathaniel can have the final word…
Standing in his best “Super Nathaniel Super Pose” in front of the Olympic Stadium: "I just saw the Olympic Games Opening Ceremony and it was SUPER EPIC!"