Welcome
Hello, and welcome to the second issue of Action for Asperger’s Magazine. This year has been an exciting time for the charity, from setting up AfA in Wales (page 6), to our new Sensory Therapy Room on page 9, and we simply couldn’t fit it all in the magazine. To keep up to date with all the work and activities AfA do, be sure to check the website and the facebook page. This is my second year as editor, and it’s amazing how much can change in a year. In March this year I set up a design company with my best friend, LittleStreams. We make education resources and games, and have big plans for the future. It just goes to prove that Autism needn’t be a barrier to doing what you love. I believe that everyone should be supported and encouraged, and I am delighted to read so many comments people have made about how AfA have helped people to not only accept their autism, but to actually be proud that they are so special (page 14-15). If like me, you loved lego as a child (in fact I still do love it, as evidenced by the lego themed logo I made specifically for this issue’s front cover), then flick to page 16 for an article on Lego Therapy. For the music lovers out there, our Client Representitive James Read gives us a moving article on how music has helped him cope with years of undiagnosed Asperger’s (pages 10-11). I hope you enjoy reading this year’s magazine as much as I have enjoyed puting it together. Rebekah Humphrey-Bullen Action for Asperger’s Magazine Editor
ACTION FOR ASPERGERS
Registered Charity No: 1148790 Registered Address: Lilford Lodge Farm, Barnwell, Near Oundle, Peterborough. PE8 5SA CEO of AfA and Executive Editor Elaine Nicholson - elaine.nicholson@actionforaspergers.org Editor Rebekah Humphrey-Bullen - editor@actionforaspergers.org Graphic Design and Photography: Rebekah Humphrey-Bullen, Paul Bullen, Samuel Lovegrove Join our team. Wanted: Graphic Designers, writers, artists, photographers. Email Rebekah at editor@actionforaspergers.org for more information Special Thanks to LittleStreams.co.uk for designing the magazine and RiversidePrinters.co.uk for printing the magazine. Search ISSUU on the App Store to read this magazine on your iPad.
Lindsey Burch was one of the first trustees when Action for Asperger’s was set up. She is committed to the cause, and is always keen to learn more about how Asperger’s and Autism affects different people. Lindsey is married with two grown children, and she is a Christian. As well as being involved in AfA, Lindsey is Chairman of Thrapston Charter Fair, involved in the setting up of a farmer’s market, and volunteers for the charity ‘Operation Christmas Child’, which delivers shoeboxes filled with presents to poor children in other countries. In her spare time, Lindsey enjoys karaoke and tracing her family history.
I have known Elaine Nicholson for over 15 years, and I knew she was involved in charity work. We met through our love of Karaoke, and she would often talk to me of her dream to set up a charity for Asperger’s Syndrome. 2 years ago, to my great surprise, she asked me to be a Trustee of her charity; Action For Asperger’s. I was stunned. I knew nothing about being a Trustee or of Asperger’s. Nonetheless, I was honoured she thought me worthy…although felt very unworthy myself. Could I help Asperger’s syndrome people? Was I up to the job? I accepted, and I vowed to learn as much as I could about Asperger’s syndrome. My friend’s son has Asperger’s, so I told her about Elaine, and they both now see her regularly. Sometimes, I have felt very much out of my depth, but after 2 years, feel I really understand Asperger’s now, although I still have a lot to learn. There is no greater teacher than Elaine, and I have learnt a lot from my friend and her son, and others I know who have it. I was amazed how many people I knew who knew someone with it. I also have learnt a lot by watching Doc Martin on TV! I have met a lot of ‘Aspie’ people at Trustee meetings and fund raising events. Each one is unique, and each different from the other in how they react to certain situations. I
know I have a lot more to learn, but am very passionate about it. I see how hard Elaine works, and the amount of time and effort that goes into running a charity. She has taught me a lot, and if I have questions, she readily answers me. I now feel as though I can recognize Asperger’s traits in people! What surprises me the most is how people shy away from this sort of syndrome. If people can see it…if its visible, like a broken leg, or Motor Neurone, I’ve noticed that people react differently…they are more responsive to physical conditions, which can be seen. This really surprises and upsets me. Asperger’s cannot be seen in the majority of cases, and consequently Asperger’s people are often overlooked as people with special needs. We are all in this Journey of life to support and help each other.
As a Trustee it is my desire to get enough grants and funding so that Elaine can get the help she needs to run the charity as she would like; more counsellors, a medical secretary etc. It’s heart-breaking when we get turned down. I feel we must really promote this charity at every opportunity, go for every grant we can, every award we can get nominated for. If we can make our charity a household name, then more people can access the emotional support they need. I hope this is something we can achieve in the coming year. Thank you to all those who in any way have helped me understand Asperger’s better. God Bless Lindsey Burch [Trustee]
AfA Wales February 3rd 2014 signalled the first date of the new Action for Asperger’s counselling surgery in Llandudno Junction, North Wales. The idea of a surgery in North Wales came after Elaine visited the area on 2 separate occasions to talk on various topics, and at these talks it became apparent that there were a great number of people who were desperate for help. In fact both talks went on over way the allocated time due to the number of questions and queries people had for Elaine!
a number of suitable premises and sent out letters to the relevant people in charge about possible usage of them. I also sent out emails. It was hard because so much of the correspondence was completely ignored, much to my frustration. I find this happens a lot in all kinds of situations. So often my emails and letters get ignored and I have to then find an advocate to help me make a phone call or visit in person as it feels as though this is the only way make things happen, and it strikes me as quite discriminatory towards people with any kind of When Elaine came to me and communication condition. said we should start a counselling surgery, and she would like me to Despite the difficulties and the take charge of it I was gobsmacked. knockbacks we ended up with 6 At that point I had very little belief offers of premises that we could in myself and couldn’t fathom out use. I managed to arrange a how someone could have that level viewing on one which seemed to of confidence in me. However the fit our requirements best, and so fact that she was willing to put that we found our initial premises. level trust in me meant I had to take on the challenge and I had to Once I had organised the premises, make it a success. the advertising had to start. I posted everywhere I could think The start of the journey involved of online. Facebook pages and scoping out premises that we groups, forums, twitter – anywhere could use to hold the counselling and everywhere with a relevance. surgeries. Not an easy feat given I also sent out emails around it requires a lot of communication local organisations, local schools, with a lot of different people and the local council and friends and that’s where my main difficulties acquaintances to try and get the lie. However knowing Elaine word around. I also contacted a believed I could do it gave me the local newspaper who agreed to run fight I needed to push myself out a story about the project, and did of my comfort zone. I scoped out quite a big feature on us.
The appointments started coming in and suddenly we had a full diary for the first surgery – 2 assessments and 4 people desperately searching out advice and guidance. Since beginning these surgeries in North Wales it has become very apparent that the service is needed up here. In my role as chief organiser/administrator I deal with the emails and take the phone calls that come in enquiring about the service. I’ve had to push myself so far out of my comfort zone but to do it, but I’ve coped really well and actually it’s really helped in terms of my own personal development. Each time I deal with a phone call successfully or respond to an email well and get a grateful response my confidence and belief in myself grow that bit more. I have dealt with many people during this project. Many desperate people, many people relieved to have finally found some help - from people with an autism spectrum condition, to parents and grandparents. The surgeries are going from strength to strength and currently we are fully booked up until December! Now the next task is to try and secure funding in order to secure the future of AfA Wales! Sonia Owen Client representitive.
Last season I had the privilege to organise a fishing day with another volunteer, Chris. Our day started around 8.30 a.m., so it was an early start for the youngsters. From where the parents dropped them off, we then took a short walk to a nearby lake. The lake was positioned next to a stretch of the River Nene, which gave us the choice – river or lake to fish in? As it happened, we flitted between the two waterways.
from perch, roach, rudd and small chub, some large some small. Some youngsters had to overcome certain fears to enjoy their fishing, like handling maggots and the feel of slimy fish scales. Chris and I watched as their enthusiasm grew with each capture.
The lads who had signed up for the fishing day were keen to catch some fish. Chris and I were equipped with fishing rods, poles, and baits of all types and sizes. We soon had the lads set up and fishing in no time.
Not only did the experience of fishing allay the children’s fears concerning certain sensory issues, but it also helped their math skills. How? Because by now a little bit of competition had seeped in, and the boys had begun to count their fishes as they netted them. Some of the fishes were worthy of a weigh-in also!
It was not long before each of the boys had caught fish, their respective catches ranging
As the day went on we had a break for lunch. Elaine from AfA had kindly made us all a picnic.
We ate and drank to our hearts content. Stories were swapped of the boys’ fishing successes as we basked in the summer sun. Chris and I contemplated that this was the stuff that childhood memories are made of! All of the lads had a wonderful time, chatting, sharing, learning, and doing. For Chris and I, it was so satisfying to see these young men enjoying their adventure on the riverbank. It was soon time to head for home, and so we said goodbye to the fishes swimming in the nets by setting them free in the vast water space. What an enjoyable time we all had! By Anthony Mathieson Charity Trustee and Vice Chairman
Education
Through the course of our counselling work, it is not uncommon to come across an issue that is to do with a client’s school or college experience. It might be that a client needs assistance with the statementing process or advice to tutors/ teachers regarding which ‘management’ is required. To this end, we have taken on Kate Pode as our Educationalist. Kate has a M.Sc. in Special Education and a PGC in Autism, along with personal experience of having a son with Asperger’s syndrome. In addition to autism-specific advices within the educational environment, we can also undertake covert observations within a school/college setting to evaluate if a student is on the autism spectrum or not. We can also undertake formal Autism Diagnostic Obser vation S c h e d u l e (A D OS -2) assessments.
Sensory Room
The sensory room is now complete. As autism-specialist counsellors, we use sensory therapy equipment to aid the counselling experience of the autistic client. We have found also that the neurologically-typical client, who comes to us for counselling and who is in a close relationship with an autistic person, also reports enjoying the sensory counselling therapy experience. In the AfA counselling space, there is something to appeal to all the senses. We have blackout blinds as standard everywhere. The main sensory therapy room is beneficial to many and is the only non-institution based sensory room for miles around, which means that the room is accessible during school and college holidays, as well as evenings and weekends.
Please note that we have leaflets for both services: ‘AfA Education’ and the ‘AfA Sensory Therapy Room’ available from our main office. Email info@actionforaspergers.org for more information.
Music And Asperger’s Syndrome
I have always had a love of music and a keen musical ear. I can remember when I was about four, one of the speakers was accidentally disconnected from the record player in our living room. I used to love listening to mum and dad’s records and must have quickly picked up on the fact that part of the sound was missing from the music and I was no longer able to hear certain parts and instruments. I think I tried to explain this to my parents but didn’t quite know how; not being able to hear the difference as easily themselves, it was weeks before they discovered what had happened and reconnected the speaker. Having being diagnosed with Asperger’s late in life, I look back on such childhood events an recognise the attention to detail and sensitivity to sound that is common with many on the autism spectrum.
I play guitar and compose/record my own songs; I play and learn mainly by ear. Like any special interest, playing music has helped me to connect with others and develop relationships. It also gives me a marvellous sense of release, being able to communicate thoughts and emotions that I find difficult to verbalise and get out in other ways; That’s always something I’ve struggled to do, having undiagnosed Asperger’s Syndrome until early adulthood. More generally, I’ve always appreciated the way people express themselves artistically through music and lyrics. It’s something I’m still learning about constantly and I intend to continue developing the gift of expression I was born with.
James Read Client Representative
6 months ago I was diagnosed with Coeliacs Disease (pronounced see-le-ack), an autoimmune disease where the body reacts to gluten, the proteins found in wheat, barley and rye. If I eat gluten, my immune system reacts by damaging the lining of the small intestine. The only treatment is a completely gluten-free diet. I knew that giving up gluten would mean I would feel better. I don’t have stomach aches or headaches as much any more, and I don’t feel so tired, unless I’ve accidentally eaten some gluten (even a small crumb can make me ill). But what I didn’t expect was the vast improvement to my autism. Prior to my diagnosis of Coeliacs, I would quite often have meltdowns, especially when my computer crashed or I felt overwhelmed and stressed. I also had huge problems with sensory overload. I would find certain sounds too loud or high pitched, I was sensitive to changes in brightness, and my skin was incredibly sensitive. The first thing I noticed was that I didn’t seem to be as stressed about things. I used to have mini meltdowns weekly, especially when things went wrong. But after going gluten free, I feel I am able to cope with a lot more. Even my husband says he’s noticed I’m calmer, happier and more in control of my emotions. The next thing I noticed was that I wasn’t as sensitive to sounds or textures as I did before. I’m even eating new foods.
The autism hasn’t gone. I still get obsessions, and I still don’t like food that’s slimy. But for me, my day to day living is certainly easier being gluten free. Athough I would never have thought of doing it if it wasn’t for the diagnosis of Coeliacs Disease. Interestingly, I have been tested for Coeliacs in the past. They look for certain antibodies in the blood (Immunoglobulin A, or IgA), and an increase level of IgA strongly suggests Coeliacs Disease. However, recent research suggests that many people with autism also have a very low, or even absent levels of IgA, therefore the blood tests revealed a false negative. On speaking with my nutritionist, who has make a comment on the topic on the next page, I wondered whether there was any truth to the theory that a gluten free diet can help autistic people. My personal feelings is that it’s not that gluten free diets alleviate some of the difficulties us autistic people face. Rather, if we have undiagnosed food sensitivities, or other issues such as Coeliacs Disease, which isn’t found because we don’t produce certain antibodies, then we are unknowingly ill. The knock-on effect of this is increased hypersensitivities, less energy to control ones emotions and a heightened sense of anxiety and unease. Rebekah Humphrey-Bullen AfA Magazine Editor
Dietary Intervention and ASD The theory that autism is the consequence of the incomplete breakdown and excessive absorption of peptides (a protein component composed of 2 or more amino acids) derived from foods containing gluten and casein (wheat, rye, barley and dairy products) is the foundation of dietary intervention for ASD. The reality is that this has yet to be confirmed conclusively. The lack of suitable long-term, doubleblind, randomised placebo controlled trails has meant that some in the medical community have ridiculed any links between ASD and diet. However there is a growing body of research that suggests a link between diet and autism, and anecdotal evidence shows that many people have seen improvement. What is clear from the research is that a proportion of those with ASD respond to dietary change favourably, however some experience little or no change in symptoms. Nobody knows why the behaviour changes reported range from a near miraculous turnaround in behaviours, to absolutely nothing and everything inbetween. ASDs are as individual as those they affect, it therefore makes sense that dietary intervention should also be tailored. The theory suggests that in those with ASD gluten and casein are not completely digested; this leads to the production of large peptides with an opioid like action. The gut acts as a sieve and under normal circumstances does not allow these peptides into the blood stream. In some people the gut can become more permeable (leaky gut) allowing these peptides through the gut membrane. They then proceed to have an affect on neurotransmission by binding to
opioid receptors, creating the range of symptoms associated with ASD. So what can be expected following dietary change? Once again the removal of gluten and casein doesn’t appear to result in any specific changes in symptoms. Those reported are wide ranging, many see improvements in attention issues, sociability and hyperactivity. These changes can take weeks and sometimes months to appear, it is recommended that casein is removed for a minimum of 3 weeks and gluten 3-6 months before any impact is assessed. This makes it difficult to stick to this restrictive and sometimes socially isolating way of eating. Some people can experience withdrawal, which can also have an impact on the desire to adhere to these dietary changes. To diet or not to diet? Tests for food intolerances may not be conclusive as studies have shown that those with ASD have low levels of the immunogloblins used to confirm the presence of a problem. It is possible to test urine for the presence of a substance known as IAG (trans-indolyl-3-acryloylglycine) which indicates a leaky or permeable gut. Before making a change seek professional advice and the approval of your GP. Permanent change requires the support of family and friends and their re-education. It isn’t easy to remove gluten and casein from the diet, the rewards may be huge or non-existent, however investigating the potential for a person to react negatively to a food should be considered a tool in the treatment of autism. Liz Dark BA Hons Nutrition and specialist in ASD
Action for Asperger’s CEO Elaine Nicholson, talks about Lego Therapy, and what it can offer us. In this article she refers to the book ‘Lego Therapy’ by Daniel B. LeGoff. Like an excited child, fanning through the pages of a ToysR-Us catalogue in the month of November, the words “I want, I want, I want” were to the forefront of my mind as I turned the last page of this book. It is a therapy-in-a-book. A ‘how to’ manual. LEGO-Based Therapy is not new. LeGoff et al developed their innovative therapeutic approach in the mid 1990’s and it arose from an ‘inadvertent observation’ of two boys in Dr. LeGoff’s private practice in Honolulu, who, though unconnected to each other, discovered each other through their Lego play. The book on LEGO-Based Therapy defines a particular therapeutic approach. It is a ‘social development programme’ according to its authors, and its aim is to provide a social development intervention for children with Autism Spectrum Conditions (ASCs). It is a
‘collaborative therapy in which what gives this therapy a children work together to build ‘leg up’ is that it is engaging, LEGO models’ (p.27), although inviting, and a safe experience can be used in either individual for such a client group. Not or group therapy modalities. only that, but it takes a lead The authors claim that LEGO- from the work of Tony Attwood Based Therapy may also be (Attwood, 1998, p. 96) and utilized to assist other similar his concept of ‘construction conditions that affect the social application’ and the fact that competency aspect of a child’s if a therapist is using a child’s development, and special interests to so therefore this motivate learning therapeutic style and change for the What gives this is not restricted to child, then ardent therapy a ‘leg up’ is autists. engagement that it is engaging, and subsequent inviting, and a safe fol low-t h roug h LEGO-Based experience. on the part of the Therapy stems child is likely to from the notion that children with Autism follow. In 2008, Gomez de la Spectrum Condition (ASC) Cuesta and Baron-Cohen from often lack the motivation to the Autism Research Centre Cambridge, embarked improve their social functioning in and here we have a therapeutic upon what was to be a third model that requires both social assessment of LEGO-Based interaction and communication Therapy, and they found that with peers, something autistic children showed improvements children are inherently not in maladaptive behaviour, social good at and usually shy away autism-specific from. However, despite this, difficulties and duration of
social interaction with peers. LEGO-Based Therapy teaches turn taking, sharing, making eye contact when needed and social rules adherence (using greetings). This is not random play. It is play with a structure and purpose and yields positive results after only three months’ engagement according to LeGoff et al’s research statistics that were generated both pre-treatment and posttreatment. An impressive 69% improvement was seen in the frequency of self-initiated contact with peers during free play sessions from pre to posttreatment. Other psychologybased tools were used to measure efficacy of the treatment in other areas of functioning, such as Vineland and GARS-SI, and these also showed a ‘statistically significant difference’ for the better. Specialist roles with associated tasks are assigned to LEGO Club participants, such as ‘parts supplier’, ‘builder’, and ‘engineer’. Children are encouraged to swap roles and tasks and engage in intelligent conflict resolution and social problem solving with very little adult intervention. Also key to this model is to establish selfregulation and peer-mediated corrective feedback very early on, with children reminding each other about the ‘rules’ of engagement as opposed to the therapist doing the reminding. The ultimate aim is for children to develop a relationship that
is independent of the LEGOBased Therapy, with children meeting for ordinary ‘play dates’, which would then indicate a measure of success in their social communications.
quality’ by drop-testing a Lego creation to see how much it can/ cannot withstand with gravity. The highest level is that of ‘LEGO Master’ for which they will have initiated/coordinated a larger construction including 300+ pieces. A fifth level of “LEGO Genius’ was created to appease a few LEGO Masters in LeGoff et al’s original study and may take the form of a script and/or short, animated screenplay.
There are three activities in a LEGO-Based Therapy group: (1) repairing and restoring existing sets (2) Building new sets and (3) Building ‘freestyle’ creations in groups. In addition there has to be a positive and effective social milieu in place, In chapter 7, the Children are with staff that are reader is informed encouraged to both competent of how to set up and experienced engage in intelligent a LEGO-Based conflict resolution at the helm (they Therapy group and social problem recommend 2 and is apprised adults to every 6 of three options solving. children). LEGOregards play space: Based Therapy has (1) a permanent four core programme levels LEGO-Based Therapy room of achievements with goals (2) a temporary LEGO-Based and challenges specific to each Therapy room or (3) a portable level. The first level is ‘mode 1 – LEGO-Based Therapy ‘space’. individual therapy and pivotal The authors claim to have tried skills’. Moving up through the all three settings and discuss levels is dependent on mastery in detail the advantages and of collaborative tasks set, for disadvantages of each. How example, once a child needs a LEGO space should be fewer non-verbal prompts, designed is made clear, and I this marks the start of their for one, after having read the learning about turn-taking, book, am in favour of (1). Why? and once they have shown that Because after having read the they can turn-take, then they book my preference would be can graduate to ‘collaborative to neutralise this therapy, and freestyle building’. The children keep it very much to itself, save decide movement through the a blurring of therapeutic lines. levels, although the therapist has a final veto if dissension “…A critical factor in the long occurs. Symbolic diplomas are range success of a ‘LEGO Club’ awarded as higher levels are is retaining set directions” achieved. Diplomas may also (page 96) be awarded for ‘engineering
As the reader approaches the end of the book, ‘Assessment Procedures’ are discussed (assessment forms for re-producing are in the Appendices). There are two elements to this. The first is the initial assessment, and the second is the progress assessment. There should also be annual re-assessments. There are also targeted areas for observation: the first is the ‘frequency of self-initiated social contact’, the second is the ‘duration of social interaction’, and the third target is ‘the frequency of stereotyped movements and potentially stigmatizing mannerisms’. The authors’ stress that observations should be consistent however, in that the same rating criteria are used throughout e.g. Wechsler intelligence tests and Gilliam ASC Rating Scales for example, to measure levels of therapeutic success or lack of as the case may be.
on LEGO-Based Therapy, details the perspectives of the children in her sample; one of the outcomes was the need to improve the rewards (eg. a brand new LEGO set given with each certificate/diploma).
The authors aver that the LEGO-Based Therapy Club engenders in children the confidence to pursue other relationships in more challenging social contexts. Typically isolated children can feel part of something. In 2008 Luiselli et al commented that LEGO-Based Therapy was ‘the only social developmental intervention currently available to providers’. However, as the CEO of a specialist autism counselling charity that runs a ‘Minecraft Club’ I am aware of how Minecraft (computer game) does very similar things to that which the Lego Club says it does for the ASC client group, Lego Club gives and in this regard, children the Experiences of Lego seems rather running LEGO confidence to pursue o l d - f a s h i o n e d Clubs are also relationships in more and risks being discussed, with challenging contexts. o v e r t a k e n . Ruth Howard, However, LeGoff’s Regional Officer LEGO-Based of the National Autistic Society Therapy still holds value as (page 112) advising that LEGO is still sought out and club leaders should carefully enjoyed by children, affording consider the cliquishness them various developmental of children also…will the ‘gains’ that have been children’s differing personality scientifically proven through types mean that they will peer-reviewed research to like each other and get along ‘grow’ with the child over time, well? A trainee Educational enhancing social efficacy, and Psychologist, Elinor Brett, who combating downward trends did some qualitative research in areas of social avoidance and
anxiety. There is a caveat to LEGOBased Therapy: the authors warn: ‘including children with behavioural conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiance Disorder (ODD), or other externalizing conditions, who also have social skills problems, is not productive’ (p. 67). With this in mind, I can only deduce that LEGO-Based Therapy and the success of it will depend very much on a child’s diagnosis being firmly and unquestionably as being on, or like, ‘autism spectrum’, and that those children who have a co-morbid descriptor such as ADHD will be discounted. This does not sit well with me, bearing in mind the vast numbers of ASC-with-ADHD children I see in our charity consulting rooms. Nonetheless, I still feel the ‘I want, I want, I want,’ urge, and if I manage to pull my utopian vision off, then our charity’s separate LEGO-Based Therapy room will become a reality; a separate LEGO Club room being my own personal preference! Elaine Nicholson Chief Executive Officer
Lego-Based Therapy is by Daniel B. LeGoff and is available on Amazon.
Understanding Stanley is a project 14 years in the making. It is more than just a photobook. It is a visual representation of autism; a moving and powerful book with a strong message. Rosie said this isn’t ‘a ‘what to do’ book about autism. It is a ‘what it might feel like’ book about autism.’ And that is certainly what she’s created. Each photo is a visual metaphor of what it feels like to have Autism. “My motivation was to raise understanding – the foundations upon which acceptance and support can be built. Without understanding, you have nothing. Pictures can speak to people at an emotional level in a way that words alone cannot, which for me is a far more potent outcome and gives people something much more powerful to take away with them”. Rosie’s son, Stanley, was diagnosed with Autism when he was three. Like many parents of autistic children, she received comments such as ‘he looks fine to me, you wouldn’t
know.’ She says she quickly realised that the invisibility of Autism was going to be the biggest challenge, as other people would find it difficult to understand and accept the complexities of the condition. All images are supported by quote from people on the spectrum, or those who work with them. This offers additional meaning to each photo, and adds to the moving nature of the book. What I like most about the book is that it doesn’t just focus on the social interactions autistic people face. It also looks at the sensory perceptions an autist may experience. The books target audience isn’t necessarily people affected by autism. Instead, Rosie says she is hoping to reach those who aren’t currently steeped in understanding about autism. “The people who are never going to sit down and read a text book on the subject. The person standing in the queue at the supermarket or at the bus stop who is staring and making misinformed judgements... If people could just
experience a feeling about what this life might be like, I think there would be less reason for them to judge.” The book has received much praise. One man with Asperger’s said ‘you have created my autobiography’, and the renowned neuroscientist Uta Frith, who has spent her life researching and studying autism, said “I am full of admiration for this book and would recommend it to anyone … It poses the right question (what is is like to be autistic?) and never sensationalises. Rosie has managed to convey what I call ‘The beautiful otherness of the autistic mind’”. The book is available to buy now from www.rosiebarnes. com/shop or via www. understandingstanley.com. As part of the mission to spread awareness, Rosie is asking people to consider donating a copy of the book to their local school or college. By Rebekah Humphrey-Bullen AfA Magazine Editor
Images Š Rosie Barnes
Elaine’s Trip to
THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME
On a beautiful autumn day, I set off on the train from Kettering to London, with supporters Ben Wesley and his Mother Karen to see ‘The Curious Incident of the Dog in the Night-Time’, a play that is based on Mark Haddon’s award-winning novel, adapted by Simon Stephens and directed by Marianne Elliott. The story is about a mystery surrounding the death of a neighbour’s dog that is investigated by young Christopher Boone, who has Asperger’s syndrome-like issues, although Asperger’s Syndrome is never formally stated. Against his parental orders, and in spite of his own personal limitations, Christopher sets out on
a journey to unearth the factual truth behind the dog’s murder. The teen unearths more than he bargained for and eventually the secrets of his own life become undone before his very eyes. The Curious Incident of the Dog in the Night-Time is a combination of a murder mystery and a tale of personal discovery. The character Christopher is described by many theatre critics as being somebody who is ‘on the edges of society’. He is, of course, one of the 1% of the world’s population that has Asperger’s syndrome. At the end of the first half, Ben and I turned to each other; the pained expressions on our faces said it all. Why did
we look so saddened? Because the laughs from the audience occurred each time the main character, Christopher, displayed a typical Asperger’s response or reaction. On hearing the laughter, it felt personal. Ben and I could not chuckle at the scenes which clearly amused the audience so much, and why? Because Asperger’s is our reality. Asperger’s occasionally raises a laugh among family members in the comfort of our own homes, but it can also cause rivers of tears; tears which most of us endure and experience in the four walls we call home. We both perceived it as a jocular ‘poke’ at individuals with Asperger’s syndrome to humour the mainly NT
audience. Ben was so incensed by the laughter that he struggled to sit through the second half. While I was not as enraged as Ben, I felt unhappy…laughing at someone’s disability is not on! However, though I was on tenterhooks, the second half contained fewer ‘poking-fun’ moments, and when Christopher lost his pet rat to the railway tracks and became frantic, I considered that any pet-lover, regardless of neurology, would have acted in much the same way at the loss of a most loved pet. Consequently I forgave the laughs for that!
These sections are mesmerising and impressive to the neurologically-minded audience, but they might prove too much for the autistic brain. Lots of flashing lights, loud, sudden sounds and visual distortions create a manic experience.
recalled visiting us at AfA to gain some ‘material’ pre-role. I answered that he must have mistaken me for someone else. I gave him an AfA card in the hope he might ‘Google’ us to enhance his role some more for future productions. Abe and the cast were all fantastic actors I might At the close of the show, add. I had decided that I would like to try to get The Curious Incident of a photograph with one the Dog in the Nighttime of the cast. Ben, Karen has performances on and I made our way to Monday – Saturday the Stage Door. We evenings at 7:30pm and were lucky; Abe Rooney matinees on Thursdays (Christopher) came out and Saturdays at for a ‘breather’. He 2:30pm. The running asked me what I thought time was 2 hours and of it, and I explained 45 minutes including an my feelings just as you interval. For those Asperger’s read them in this review. individuals who suffer Abe commented that he Venue: Gielgud Theatre, 35 Shaftesbury Avenue, London, acute sensory issues, W1D 6AR I would hesitate to recommend the show, for Review by Elaine Nicholson, at times, choreographers AfA CEO. Scott Graham and Steven Hoggett amp up the movement, while designers turn up the sound and Photo: Elaine pictured raise the projections with Abram Rooney aka ‘Christopher’ after the show. to give us a hint of the sensory overload that assails Christopher.
My Story Sonia
The first contact Elaine and I had was two and a quarter years ago, in May 2012. I have a formal diagnosis of Asperger’s Syndrome which I received just over 3 years ago, in June 2011, and Elaine is a specialist counsellor for people on the Autism Spectrum, who founded and runs the charity Action for Asperger’s. Our relationship started as a clientcounsellor one, but over time has grown and developed and we have become colleagues, friends and more than that, like surrogate mother and daughter to each other. I feel we have a very special bond and I feel very privileged to have such a close bond with such a special person. Our story began about 10 months after I was diagnosed. I live in North Wales, and like many people I’ve since spoken to in this area, I was given no support in dealing with my diagnosis. I had spent months doing a lot of research about Asperger’s Syndrome, trying to understand the condition and how it affects me. I had also visited lots of chat rooms and forums for people on the Autism Spectrum looking desperately for like-minded people to talk to. I got talking to someone on one of the forums and they suggested I contact Elaine for help. I plucked up the courage to send her an email and that’s where it all began! Our contact started off as email, and then progressed to Skype –
Owen
because Elaine lives 200 miles away Since that first visit our bond has from me in Northamptonshire! continued to grow. I was lost and living in a world of depression when At first I struggled during our I found AfA and Elaine, but Elaine counselling sessions. My lack has taught me that I am valued and of understanding of social and worth something. She gave me the communication rules meant that role of Client representative for her growing up I went through a lot wonderful charity in November of bullying and teasing, which had 2012, followed in January 2013 led to huge levels of anxiety. I had by her asking me to set up the grown to believe that things I said Facebook Page for her. Action for were stupid and I always got things Asperger’s means the world to wrong. As such I was highly anxious Elaine, and knowing this meant it about speaking. The means all the more to anxiety was so bad ‘Elaine’s belief in me that she wanted that I could literally me gave me the me to become a part of go for a whole session it. I didn’t understand belief in myself. ’ only managing to what she saw in me speak a handful of but I knew she must words! It really frustrated me but it see something in order to want me never mattered with Elaine. There associated with her charity so that was never any judgement, never gave me some self-esteem – one of any pressure, and just a lot of work the things I was so badly lacking to help me to feel comfortable and when I first met Elaine. build up my trust in her. I took on the task with pride and After 6 months Elaine and I Elaine’s belief in me gave me the finally met in person. I had belief in myself to realise I could been so grateful for her help take on the responsibilities and and support that my best friend carry them out well, and I did just and I fundraised for Action for that and continue to do so. Asperger’s. We raised £265 which we then arranged to take to Elaine We had our second meeting in in Northamptonshire. It was an person at the website launch that amazing day which only served Elaine arranged. It was at the end to strengthen our bond. This was of March 2013, not long before my cemented when, during dinner at a birthday. People with Asperger’s pub, I became distressed and went Syndrome tend to lack friends we into meltdown, and Elaine took me often miss out on birthday parties by the hand, took me outside and growing up so because of this then took me in her arms and held Elaine surprised me at the launch me so tight while reassuring me it party by bringing out a birthday would be ok. cake, making a really lovely speech, and getting everyone to sing
‘Happy Birthday’ to me. Nobody to take on the challenge and I had had ever done anything like that to make it a success – and so far it for me before! is proving to be a success. We have continued to have lots of meetings in person, as well as email communication most days, and Skype sessions when needed – although I’m at a point now where actually I need far less in the way of counselling that I did at first. That is thanks to the work Elaine has done with me. She has really helped me to help myself. She is a Godsend for me. She has given me an outlet for all the rubbish I was carrying around and helped me to see that my past shouldn’t rule my future anymore. She has given me a purpose and a focus and helped no end in my understanding of Asperger’s Syndrome, my understanding of how it affects me and my understanding of the world and my differences. Her knowledge of Asperger’s Syndrome means she understands more than any counsellor or therapist I’ve had before.
I’ve had to push myself so far out of my comfort zone to do it, but I’ve coped really well and actually it’s really helped in terms of my own personal development. Each time I deal with a phone call successfully or respond to an email well and get a grateful response my confidence and belief in myself grow that bit more.
Our relationship as colleagues also developed further when she gave me the massive responsibility of developing Action for Asperger’s in Wales. The idea of a surgery in North Wales came after Elaine visited the area on 2 separate occasions to talk on various topics, and at these talks it became apparent that there were a great number of people who were desperate for help.
When I met Elaine I longed for acceptance and reassurance. I longed for a mother figure who would accept me for who I am. Who would have the understanding I craved, and would be there to catch me if I was falling. Who would hold me tight and tell me things will be ok when I needed reassurance. I didn’t for a second expect that Elaine would be the one who gave me those things, but she has given me all that and more.
When Elaine came to me and said we should start a counselling surgery, and she would like me to take charge of it I was gobsmacked. At that point I still had very little belief in myself and couldn’t fathom out how someone could have that level of confidence in me. However, the fact that she was willing to put that level trust in me meant I had
The relationship between Elaine and I has also developed on another level. For a long time I had an incredibly fractured relationship with my own mother. She struggled to understand my Asperger’s Syndrome and the level to which it affects me. She always had the best of intentions for me but didn’t always get it right. As such we had a strained relationship and I was a young lady who, when I met Elaine, was lacking in a nurturing, maternal mother figure.
I could never have imagined when I made that first contact with Elaine that things would progress to where they are now. I never would have believed that a person could see in me what she has, because I couldn’t see it in myself, and I never could have imagined we’d develop such a
close and special bond. It has made such a difference to my life knowing that I have Elaine’s support. Knowing that if I’m really struggling and feeling like things are getting on top of me or too much for me, I just have to reach out and Elaine will be there to catch me. It doesn’t matter what the issue is, what’s bothering or upsetting me or anything. There is great comfort in knowing you have a support there that you can turn to whenever you need it. Action for Asperger’s and Elaine have literally helped me to turn my life around and have put me on the right path to building myself a life worth living. A life where I’m not living in a cloud of constant depression. Where although I clearly have an anxiety issue of some kind, it doesn’t completely rule my life anymore. Where I feel wanted and valued and where I finally have some belief in myself that I am worth something. Where for the first time in as long as I can remember I feel genuine times of joy and happiness. Sonia Owen Client Representative & Facebook page administrator Action for Asperger’s