Autumn 2013

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 and Creative Director

Rebekah Humphrey-Bullen

editor@actionforaspergers.org

Graphic Design and Photography:

Paul Bullen

Samuel Lovegrove

Grace Billing

Writers and Contributers:

Sonia Owen

Johnathon Kaye

Robert Mann

Join our team. Wanted: Graphic Designers, writers, artists, photographers.

Email Rebekah at editor@actionforaspergers.org for more information

2. Contact Information 4. High Tea 7. Competition 8. Hall of Fame 11. Feature - University 14. Interview with Elaine Nicholson 16. Merchandise 18. Feature - Meltdowns 20. Reviews 22. Which App? 24. Next Issue

A rainbow array of cakes sat on tables that groaned with the weight; more cakes than anyone could eat, all richly and beautifully decorated. Jam filled scones sat, ready for eating, and meat & cucumber sandwiches disappeared as quickly as they were placed. It was a day of charity fundrasing in the sweetest way possible; the Action for Asperger’s High Tea event.

noise, a tent was placed at the bottom of the garden, as a sort of make shift chill-out zone. Everything was well thought out and Autism friendly.

The event was opened by BBC radio presenter John Griff, who has had an interest in the charity since founder Elaine Nicholson came to talk on his radio show.

The event was put on to raise money for the Sensory Therapy Room at the Action for Asperger’s offices in Oundel, Peterborough. An amazing total of £1709.75 was raised.

Talking about the event, John said:

We were fortunate with the weather; it was a warm day with no rain. The event was filled with entertainment. There was a bouncy castle to entertain the children, and plenty of music.

‘I was impressed by the preparations that went into putting the High Tea event on - everyone had clearly worked very hard and there were enough cakes and scones to satisfy an army - maybe an army of Action for Aspergers supporters!

It was a real pleasure to be invited to For those who felt overwhelmed by the come along and be part of a fabulous

afternoon in the sun - congratulations to all the performers and participants and I hope that you raise all the money you need to be able to equip the sensory therapy room with all the new equipment.’

As the afternoon progressed, the microphone was opened up for anybody to come and perform. Mark and Sam (photo below) sang beautifully.

Overall, this was a highly successful event, and one which we hope will be repeated.

The beginning of the event featured many great class duos and performers. This helped to create a pleasant atmosphere.

To find out about future events, and to donate, visit:

www.actionforaspergers.org

At University, you can study anything from science to the arts, sports to health and beauty. And for those looking for something a little more unique, you can choose to study Harry Potter at Durrum University, Zombism at the University of Boltemore, or, for you Trekkies out there, Klingon at the University of British Columbia. So there’s something to suit every obsession.

What ever your special interest and hopes for the future, there’s never been a better time to look into further and

higher education. However, whether it’s college or university, it’s a hard enough life change for anyone to cope with, let alone those of us on the Autistic Spectrum.

In this feature, we offer tips on how to get through education from finding the right institute, to coping with your studies and the social life when you’re there. The Disabilities Coordinator from University of Chichester, Steve O’Melia offers us his professional opinion.

Which University?

Choosing the right University and course is one of the most important decisions you will make in getting the right support through your education.

‘It is a good idea to decide first what course you are interested in,’ says Steve O’melia, Disabilities Coordinator of the University of Chichester. ‘Then use this to identify which Universities are offering that particular course. Go through the courses to see what options they offer and how they assess. Most programmes will assess using exams, essays, presentations, group work etc. Decide whether any of these are a problem for you and see what the balance of assessment is on a particular course.

That might help you discount some universities straight away.’

Commute or Reside?

‘Once that has narrowed down the number of Universities,’ continues Steve, ‘you might want to consider whether the distance from home is important. Do you want to commute? Do you want to live on campus? How far are the halls from the University?’

Halls of residence tend to be blocks or houses with a number of bedrooms, a shared kitchen and sometimes shared bathrooms, though you can get ensuite accommodation.

‘With accommodation you should find out how the accommodation is set up re how many people you might share a kitchen with, how noisy the environment is etc. Also, discuss with the Disability Advisor whether you can get priority for accommodation to meet your disability needs.’

Catering is another issue to consider: ‘If you’re a particularly fussy eater then you might find catered accommodation can be difficult.’ Some universities offer a larger range of food than others.

You can go self catering. You don’t pay for meals as part of your accommodation costs, ‘however, if you are self catered then you need to consider whether you can manage shopping, cooking, budgeting etc.’

Do I disclose my disability?

To disclose or not to disclose, this is a commonly asked question. Some people may feel concerned about disclosing their disability. They feel that they might be judged unnecessarily judged. Or they may be concerned that they will receive a negative label due to their disclosure.

‘Disclosing your disability in advance is really helpful as it ensures the University is aware of you,’ suggests Steve. ‘If you disclose on your UCAS application form most Universities will write and ask for what you think your support needs might be. Try to contact the Disability Support Service at the University to arrange a meeting with them to talk through your needs in detail. That often helps to make it clearer what you can expect and what you might not be able to get by way of support.’

Disabled students are entitled to the Disabled Student Allowance, a grant available to university students to support learning. It pays for additional support, mentoring for those who need it, and equipment such as computers and dictaphones, as well as an allowance for printing.

Steve describes this grant in more detail: ‘The Disability Advisors can also advise on the Disabled Student Allowance. This is the allowance, held by Student Finance England, which can pay for your support at University. It can pay for weekly Study Skills Support and/or Mentoring sessions; special software to help your studies etc.’

A disclosure of your disability doesn’t mean that you have to tell everyone about it.

You can just let the Disability Support Services know, or just your tutors. But it is worth the disclosure.

‘If you don’t declare it means the University cannot be aware of what your needs are,’ finishes Steve. ‘However, if you are struggling, you can declare your Aspergers at any point. Making contact with the Disability Service after you have started can still be helpful as they can help you get the support you need. It can also be helpful to have someone who knows about Aspergers who can be on your side.’

What was your inspiration to start Action for Asperger’s?

My inspiration came after 1) our second son was diagnosed with AS 2) I felt that the psychodynamic course I was on, second year MSc in children/adolescent counselling, was geared wholly for the neurotypical child (autism training accounted for half a day) 3) My personal therapist didn’t seem to be ‘getting it’ (autism) and appeared to be making several incorrect interpretations and 4) My own difficulties of living with autism in the family. I felt that people (NTs) were misjudging me as an individual/wife/mother and I had to educate them about autism.

What’s the meaning behind the name?

My background is in management science, and marketing was my best subject. ‘A’ is the beginning of the alphabet and is likely to come up first in searches. I didn’t want to hide the word ‘Asperger’s’ away. How could we create awareness by calling it ‘Elaine’s wish’ or similar. The charity is not about me - it is about autism per se - I am simply a vehicle on which the cause can ride.

How has being a mum of an AS son influenced the charity’s aims?

from our highly noisy modern world. I also like to read research papers to relax! Yes, it’s true!

What are your hobbies working on the charity?

outside

I have a small breeding cattery - I breed maine coon cats - I love cats and kittens, and I particularly enjoy raising the finest kitty best i can and then sending them off to their new owners at 13 weeks of age. Gives me great satisfaction making people happy in this way.

What are your aspirations for the AfA? That it grows but not beyond the state of comfort. I hope to recruit more volunteers who, like me, have both autism familial experience and professional qualifications combined....needless to say, that is a very tall order! I hope that AfA helps to inform as many people as it can about Asperger’s and autism, banishing ignorance as much as possible.

What are your hopes for the future for Autistic understanding?

I simply would like NTs to ‘get it’ best they can about Aspergers and autism, and, by the same token, enable AS folk to understand NTs better.

Being a mum of an Asperger’s child (I have 2 That would make for a much better world.

- a step-son and my own son both with AS) is no easy role to play. You have to be a soldier of the Panzer division, ready to fight for your child’s What hopes do you have for your own rights at any time. You have to be mindful of their children for when they grow up? poor executive function (ie help them to organise & execute tasks etc) and gently aid communica- That they find work they enjoy and feeds into tion if needed. It’s like being a full-time PA, but, their special interests, and that my youngest thankfully, working for a boss you love! Being a goes to an Asperger’s friendly university. mum of AS lads has been my greatest qualification in life. My ups ‘n downs with my children is at the roots of the charity’s aims and objectives.

What can adults with Asperger’s can do now to help the next generation grow up in a more accepting world?

What do you like to do to relax?

Don’t hide their Asperger’s away. It needs statMy greatest love is unadulterated sound; being ing so many times. To banish shame (there in the middle of a field listening to nature. Hear- shouldn’t be any) and be proud of who they are. ing the drone of an engine interrupts this and an- Awareness is the key word. It can be achieved. noys me. This is my little piece of ‘heaven’ away I’m certain of that.

As every parent of an Asperger’s child knows, meltdowns are an inevitable part of life. But what causes them? And what can you do to help your child when they go into a meltdown?

Every child is unique, and has different triggers and signs. You will learn to recognise these within your own child. Some children will shout and lash out. Others withdraw, become unresponsive and unusually quiet.

What causes a meltdown?

What is the difference between a meltdown and a tantrum?

An Asperger’s finds processing the world challenging. They can be overly sensitive to light, noise, and touch, known as hypersensitivity. People with Asperger’s have difficulty communicating how they are feeling. The result is a flood of emotion the Asperger’s child cannot express or cope with.

Every child has tantrums. Meltdowns can look similar, but there are differences:

- A child having a tantrum will want you to notice, so will check to see if you are paying attention. During a meltdown, however, the child becomes unaware of their surroundCommon triggers are noisy, bright and busy ings, and doesn’t care who sees their beenvironments; unexpected and unplanned haviour. for changes and high tension situations - Children have tantrums to elicit a response and manipulate you into getting what they want. Tantrums can be stopped by walking What does a meltdown look like? away or distracting the child with something A meltdown can look like a tantrum, espe- else just as or even more enticing. A meltcially in younger children, making them hard down, however, isn’t as easy to console. to distinguish and even harder to deal with. The child having a meltdown cannot be easMany of the techniques used to deal with a ily distracted. Walking away from the child tantrum will not work when the child is hav- will not stop the meltdown either, as they ing a meltdown, because what is happening are not trying to perform to an audience. inside the child’s head is very different.

- A child having a tantrum might threaten to cause themselves harm; holding their breath for example. However, they wont want to cause themselves actual harm, nor will they want to cause damage to their treasured possessions. A child having a meltdown, however, has lost control, and can cause themselves harm without realising it.

while in a meltdown. Repetition of the same words, something reassuring, can be affective too, especially if those words are said in a singsong voice. Gentle rocking, either side to side or back and forth, can help.

If the meltdown is environmental, removing the child if possible is one way to help them. For example, the meltdown may be in a busy supermarket. The meltdown may subside once you have left the shop.

What should I do when my child has a meltdown?

For some children, it is better to leave them on their own for a few minutes. If they are How you help your child when they are havnot causing themselves harm, it might be ing a meltdown will depend on the child. better to give them some space until they However, it is inefficient and unfair to try to bring themselves out of the meltdown. This punish the child. They often cannot control can be the case for older children. As althe meltdown, and they do not have the self ways, it depends on your child and what control to calm themselves down. works for them.

A person with Asperger’s will often continue The most important thing to remember is to have meltdowns into adulthood. They can that meltdowns are part of the condition, often learn coping mechanisms to control and in no way reflects you as a parent. the meltdowns better. As children, however, they haven’t learnt those skills to help them.

Rebekah Bullen The most important thing is to remain calm.

Shouting just exasperates the situation, and Have anything you’d like to add? Any tricks which will prolong the meltdown. help you? Email me with your story to Some Asperger’s children like a tight hug editor@actionforaspergers.org

The Curious the Dog Night Novel by Mark Haddon

Book Review

by Holly Parker

This book is a fine example of metafiction; a story within a story. It follows main character Christopher, an Asperger’s teenager with an obsession with maths and science. The opening scene consists of a gruesome discovery, a dead dog with a pitchfork through it. Christopher becomes obsessed with solving the mystery, and his teacher suggests he writes a crime novel of the events.

Haddon has captured the unique insight into the world as seen by an Autisic. We, the reader, are invited into Christopher’s world, sharing in his joys as well as his challenges.

Mathematics finds its way into every nook and cranny of the book. Even the chapters are cleverly only numbered as the prime numbers; the first chapter being numbered 2, and so on.

The vivid detail of Christopher’s oversensitivity to the senses could only be written by someone who has a deep understanding of what it feels like to live with Autism. His dislike of the colours brown and yellow, of being touched, of loud noises and bright lights, can be appreciated by anyone who has the condition, and helps to create a picture of what it’s like for those who don’t.

This book held my attention, and not just because it is about an issue I hold dear to my heart. This is a real page turner. The chapters are short, and the characters are vivid.

Christopher’s pet rat serves as his companion, and shows how gentle Christopher is, despite the fact that near the start of the novel Christopher is acused of killing the dog.

My one criticism is that this book is not suitable for children, due to excessive language, despite being advertised as such.

This book is currently available as a kindle book on Amazon, or at all good book stores.

Incident of in the Time Stageplay adapted by Simon Stephens

Play Review

by Sonia Owen

It’s not often you find such an imaginative and emotional theatre performance. It’s hard to combine a mix of raw emotion with humour. That’s what you get with this highly acclaimed stage show.

The play focuses on 15 year old Christopher Boone, who has an Autism Spectrum Condition.

Christopher - a maths genius who despises being touched - becomes determined to learn who murdered his neighbour’s dog. In doing so he begins a journey of discovery beyond the identity of the dog’s killer, but of secrets about his own family.

Luke Treadaway performance as Christopher is inspired. He captures the fear and confusion of Autism just right. He is meticulousin his characterisation; never looks any character in the eye and constantly fiddling with his clothing. Luke transports you inside Christopher’s head by showing his mathematical genius, and logical thinking.

Christopher faces a world where much of it is alien to him.

Luke’s performance is nicely complimented by Holly Aird, Seán Gleeson and Niamh Cusack, who plays his teacher.

The set for this play is simple; no fancy scenery, just a

3D box that is a grid of squares, like graph paper

a reference to Christopher’s mathematical ability.

This imagery of Christopher’s thought processes allows

you inside his head and see his mathematical brain

at work. The combination of great set design and

amazing digital technology allows you seamlessly

be transported from the busy London Underground

to Christopher’s inner thoughts.

If you’re someone who lives with Autism, or you

know someone who does, you’re guaranteed to find meaning and understanding in Luke Treadaway’s portrayal.

If you don’t know much about the condition this play will definitely give youan insight into this different world and the trials and tribulations faced by people living in it.

The stageplay is currently being performed at the Apollo Theatre in London.

Create a profile, answer maths problems on a grid until you get a line, earn cute little aliens to play more maths games, it couldn’t be easier to use. Yet this addictive game of mental maths is a fun way to practise adding, subtracting, multiplying and dividing. The timer also counts up, so no panics about time running out.

Stregnths: Three difficulty settings for each operation.

Weaknesses: If you get a question wrong, it doesn’t give you a second attempt to answer the question.

This app is basically a todo list, but with many more features. You can create different colour coded files for every aspect of your busy life, prioritise your important jobs and tick off tasks done in an easy way. You can even sync between iPhone and iPad. Strengths: Intuitive use and pleasant interface.

Weaknesses: A bit pricey for an App.